The Day My Ancestors (and Chocolate) Tried to Kill Me

Yes, seriously.

I know it sounds like a tall tale, but it isn’t.  It’s a true story, I swear.  And less than a month old.

It was a trap.

A trap, I’m telling you – set by ancestors and baited with…chocolate.

If you’ve been reading my blog long, you’ll know that I’ve been involved in genealogical tourism since long before that term existed.

One of the things I dearly love to do is go back to where my ancestors lived, find their land, maybe their house, their church and understand their lives by immersion as best I can from the distance of time.

Earlier this month, I returned for my second trip to the Netherlands with Dutch genealogist, Yvette Hoitink.

Yvette replied to a comment I had made in an article on my blog about the hopelessness of my Dutch lines, back in August of 2012. Those lines were absolutely NOT hopeless, as I ‘ve come to discover through Yvette’s research, and I probably know more about these lines now than I do about many colonial lines. If you know how to work with Dutch records, know the language and history – the records in the Netherlands are fantastic. Of course, I can’t read the language, or the script, so Yvette is absolutely indispensable. Yes, I’ll share her. No, you can’t have her all to yourself😊 I’m permanently inked into her schedule.

Yvette had found absolutely amazing records, and items, and locations – enough to lure me back once again. And yes, you will hear about each and every one of these in my 52 Ancestors series, but today’s topic is, um, er, a bit different. It’s about a near death experience – literally.

The Island of Vlieland

On my second day in the Netherlands, we visited the island of Vlieland, about 30 miles off of the coast of the Netherlands in the North Sea.

Please note that you can click any image to enlarge.

You can see, on the map above, that Vlieland, outlined in red, is part of an island chain. Vlieland at one time used to be connected to its southern neighbor, Texel.

By zooming out, you can see evidence that this chain at one historic time connected to the part of Holland where Amsterdam is now located. Based on Amsterdam’s location, you can also see why any ship leaving Amsterdam for the new world had to slip between the islands of Texel and Vlieland.

Geography is so important, because in one of my ancestral lines, my ancestor died on the ship after leaving Amsterdam and was buried on the island of Texel. But I digress and will resume that story in the 52 Ancestor’s series. Take a moment to imagine how thrilled I was to be standing there, on Vlieland, looking at Texel – some 4000 miles from home.

Island Enchantment

I happen to have a penchant for islands, almost a primal magnetic draw. Always have, and maybe now I know why. I love the isolation and charm – and in this case, the fact that my ancestors lived on Vlieland back in the early 1600s. The closest port on the mainland was Harlingen, and sure enough, my ancestor married a merchant in Harlingen in 1665.  Seventy-seven years later, in 1742, her grandson had a daughter, whose birth Yvette found documented in the very most unusual birth record EVER – a silver inscribed birth spoon.

Just one picture – I can’t resist. Ok, maybe two.

Courtesy Yvette Hoitink

Yvette took this lovely photo of me looking dreamily at that birth spoon, as well as the photo below. The Fries Scheepvaart Museum where the spoon is housed was beyond helpful and had removed it from the case prior to our visit so I could hold it and “commune” up close and personal. I can’t even begin to describe this moment to you – connecting back in time to that lovely celebration. Perhaps Yvette’s photo describes it better than I ever could.

Courtesy Yvette Hoitink

Birth spoon of Geertje Gerrijts Heslinga, born 15 December 1742. Geertje’s great-grandmother, Janke Gerrits, was born and lived on the island of Vlieland, leaving the island to marry Teunis Foppes in Harlingen on March 18, 1665.  Photos and research courtesy Yvette Hoitink.

Island Life

If I have a bit of wanderlust in my soul, I’m blaming it on my ancestors. Mariners, people who lived on an island being swallowed by the sea – tell me those people didn’t have a “adventure” gene, if there is such a thing. They were clearly free spirits, in every sense of the word.

The island of Vlieland looks out into the expansive sea, a remote world of hope, opportunity and sometimes, death. Separated from the mainland in the horrible storm surge flood of December 14, 1287, on neither side of the island can you see the mainland, not even in the distance to the east. At night, the sky in the summer never darkens entirely. It’s on the same latitude with Newfoundland in Canada.

By Garli (talk) (Uploads) – Garli (talk) (Uploads), CC BY-SA 3.0, https://en.wikipedia.org/w/index.php?curid=40196314

Today, as then, accommodations exist for visitors. As ships arrived from near and far, Vlieland welcomed them. Ships and passengers had yet another day’s sailing to the mainland.

Only one village exists on the island, Oost-Vlieland (East Vlieland) as the little village of West Vlieland was swallowed by the sea in 1736. Today, a few mom and pop hotels dot the lovely, serene maritime landscape. Suffice it to say, Vlieland is off the beaten path, even in peak season. Let’s just say I couldn’t even find a touristy t-shirt saying Vlieland.

Life is different on Vlieland. This is the view from breakfast, across the deck.

The blanket? In case you get chilled from the ever-present sea breeze. Provided by the hotel restaurant, which is often filled with locals and not tourists.

In fact, there’s a stack of blankets on a chest near the restrooms just waiting for anyone who is chilly.

You can also find a bookcase with children’s games as well as board games and books for anyone to borrow or use while visiting.  The winters are probably very long on Vlieland.

The sparrow, eating my breakfast leftovers? People on Vlieland don’t worry about things like doors and screens, or birds. They exist in harmony with nature, including birds that come right in to eat with you. Yes, inside.

People in Holland are very laid back about things Americans are very up-tight about – and some vice-versa.  Cultures are so interesting.

I could barely wait to start the day, because we were going to walk down the very streets where my ancestor walked. Where she grew up.  Where her parents and sister lived as well.  I was going to walk in her footsteps.

The main street of town looks much like it did in the time my ancestor lived here. Even though we don’t (yet) know exactly which house they lived in, it was assuredly one of the houses in the village and likely still remains. We started at one end and walked to the other, past shops, houses, the town hall, the church and cemetery, of course.

In Europe, everyone walks or rides bicycles.  There just isn’t room for vehicles and many areas, especially historic regions, simply don’t allow them. No one feels inconvenienced or cares.

This house, built in 1662, was here when my ancestor, Janke, and her family walked this street.

Down the street, just a hair, we find the local bakery flying the white flag and seats in front for weary walkers, or excited eaters enjoying their delightful wares. Can you tell that I went inside?

Just take a look at their creative cookies. A joy to behold.

The entire bakery is full of wonderful delights.

Westers Bakery has the best, and I mean the very best, bar none, chocolate “thingy” in the world.

Thingy, you ask?

Well, I don’t know exactly what it is.

It’s kind of a cake brownie hybrid, dusted with more dark chocolate and maybe powdered sugar, that isn’t terribly sweet. Something like a brownie texturally, but not exactly. And it was nearly my doom.

This, you see, is where the trouble started. Well, actually in front of the bakery.

I initially bought one chocolate thingy, but one wasn’t enough, shared between the three of us, so I was going back for more. That’s when I fell into the trap.

See these things? They are called cobblestones and they are medieval torture devices with which our ancestors paved the streets, but today are used to lure unsuspecting descendants to their doom.

On my way hurrying back to the bakery, lured by the chocolate with which the trap had been cunningly set, I tripped on a cobblestone. Well, actually, it reached right up and grabbed the toe of my shoe, I’m sure. In any event, after a very undignified dance that I’m extremely grateful no one filmed, I decided that the best plan of attack, or descent, was to tuck and roll since it was obvious that I was going down.

My goal, at that moment, was temporarily distracted from chocolate to trying not to break any bones, hit my head or break my glasses.  Any one of which would have ruined the vacation entirely AND interfered with chocolate acquisition.

So, down I went, on the cobblestones. I hit pretty hard, since I had been nearly running as I tried to regain my balance. I found myself on the hard, uneven, cobblestones which were poking painfully into various body parts, taking a body part census one by one – “does it move? Is anything broken?,” to which, thankfully, the answer was “I can move it and it doesn’t seem to be broken.” But some parts hurt, a lot. Cobblestones are very unforgiving. Do not try this at home!

Then, of course, I had to attempt to regain my composure. It’s just so embarrassing to find yourself on the ground, stone cold sober.

As I lay there on the ground, still taking inventory of my various body parts, when my husband finally figured out I’d gone missing and came back to fetch me, I told him to go inside and buy that doggone chocolate, lest someone else purchase it and the bakery would run out! I mean, I didn’t sacrifice my dignity for nothing, after all!!!

Yes, I really did do that, and so did he. Here’s proof. He’s holding the white bag from the bakery.

My chocoholic friends will be proud.

I skinned my knee and I knew it would be bruised. I’ve been scuffed and bruised before. I used to be a mountain backpacker. I’ve even been sewed up by a guide on a raft on the Snake river using glacial melt riverwater as the only numbing agent available, plus a beer. So, I’m tough and I wasn’t going to let a little thing like a skinned knee put a damper on the trip.

So, I did what any person with Dutch mariner resolution running in their veins would have done. I got up, brushed myself off and kept on walking.

And because I’m either stubborn, or stupid, or both, here’s me about 5 minutes later having my photo taken with a goat statue in the street trying to pretend that nothing happened. Note the fact that I can’t bend the knee. I think the goat’s name was Lucifer and he was laughing at me, but I can’t be sure.

Guaranteed, I wasn’t smiling as much later, once reality (and swelling) set in.

Decisions

Yvette and I discussed options. There is no doctor on the island. The island folk, an extremely independent bunch, tell you that the doctor and the vet is one and the same person. I have no idea if they are kidding or not, but perseverance and time seemed like they would do the job and there was no need to displace Fido’s rabies shot with my knee non-emergency.

There is limited ferry service to the mainland, plus, we had a schedule and things to do.

The knee was painful, but didn’t seem to be “broken,” so there was no point disrupting our plans. I just limped and winced and carried on. That resilient, tenacious Dutch blood.

The River Cruise

As the days passed, the leg seemed to be getting worse, not better. I’ll spare you the pictures, but I began messaging with a person who works in medicine in the US. I was black and blue and swollen to my ankle and there was nothing I could do to get comfortable. I was tired because I couldn’t sleep well. Everything hurt.

By this time, Jim and I had embarked on a Viking River Cruise – and there is really no deviation from that schedule. The only option is to get left behind.

My medical resource in the states began to question whether I had a blood clot in the leg. Is there heat to the touch? Does it hurt? More questions. There was swelling and severe bruising, but no heat to the touch and no pain in just one place – it hurt everyplace. So, I thought the answer was no.

Things Turn Serious

My medical resource told me in no uncertain terms that the results of clots in the leg, if they break free, can be pulmonary embolisms, heart attacks and strokes – and are often fatal. Silent killers.

I’m not afraid of death, but I’m terrified of being disabled, an invalid, a stroke victim. I’ve seen that more times in my family than I care to recall.

However, it’s important to keep moving, so I walked up and down more cobblestone streets in small picturesque villages along the Rhine River. I even climbed rocks at a medieval castle. I kept moving, because I thought that’s what I should be doing.

I also got the opportunity to find three different pharmacies, in various countries that spoke little or no English.

Pharmacies in Europe only dispense drugs, not like general purpose stores here. And they aren’t open on weekends, evenings or holidays. Trying to find one on a walking tour of a medieval village during their “summer holiday” is a challenge, trust me.

Two days past the continental divide, in the wonderful medieval town of Passau, I found this lovely pharmacy, known there as an apotheke. And no, the pharmacist did not speak any English.

Even the pharmacy was located in a historic building, color coded on the outside as to the medieval function of the inhabitant, and complete with ceiling murals. You can see that this building had been an apothecary since at least 1589.

Insurance

My medical resource “encouraged me,” which is putting it mildly, to go have a doppler scan done of my leg for blood clots. I realized, about this time, that my insurance is not valid outside the US.

That is no anomaly – but the way much or most US insurance policies work.

Didn’t know that? Well, I never really thought about it either.

Just as an example, here’s Blue Cross’s web page about coverage outside of the US.

Notice that some policies cover emergency services, but what about admissions? And if your insurance policy doesn’t cover you, what does the local hospital do with you?

I just happen, by accident, to know that answer for the UK where their citizens and unfortunate visitors are all covered by socialized medicine, but outside of the UK, I have no idea. None, nada. And I wasn’t in the UK. By that time we were in Germany, Austria and Hungary.

You could easily go bankrupt with a hospital admission.

Not to mention the language barrier issue.

Believe me, I was in no hurry to discover the answer to any of these things first hand.

If you’re wondering about travel insurance, we did have a policy through Viking for that portion of our trip which covered cancellation for any reason.  For ocean-going ships, they agree to airlift you off of a boat, etc., a medical evacuation – but I had no clue about this type of problem on an inland river cruise.

Travel insurance also covers cancellation of a trip, but we were already on the trip when I discovered the magnitude of the problem.

In fact, by this time, we were within a week of leaving for home.  Surely I could just gut it out.

I was tired, tired of pain, tired of limping around, and tired of staying in my cabin with my leg elevated. I also contracted an upper respiratory infection, which normally would have been an annoyance, but when you’re already feeling crummy was sort of the last straw.

I was extremely glad to be coming home. Not exactly the way I had planned to spend or end the vacation of a lifetime visiting my ancestors’ homelands.

The Plane

Suffice it to say, I will never, ever, in my lifetime fly Air France again. As God is my witness.

I flew Delta from the US to the Netherlands and the Airbus had 6 seats across with one aisle. The same plane on the Air France trip back had 8 seats across with two aisles and people were packed in like sardines. Talk about one miserable flight. In addition, some piece of equipment was bolted to the floor in in my leg space, under the seat in front of me.

Did I mention that blood clots in the legs (DVTs or deep vein thrombosis) are nicknamed “economy class syndrome” and there is currently a lawsuit seeking to require the FAA to do something about “the incredible shrinking airline seat.” CNN Money reports that a group named:

Flyers Rights had said it’s concerned that small airline seats are actually a safety hazard, putting passengers at risk for conditions like deep vein thrombosis. That’s a potentially fatal condition that can cause blood clots in people’s legs.

Hmmm….you think???

The Clot

I arrived home late Saturday, and the leg was worse on Sunday. Not more painful, just more swelling, in the foot and ankle which had not been swollen before. By Monday morning, I was waiting on my doctor’s doorstep and later that morning, I was in the hospital. I spent a lovely day there, and yes indeed, I did have a clot in my leg.

Most of my life, I have never presented for diseases or health issues like anyone else. Sometimes unique is not a good thing, especially when your symptoms are different from the norm.

The location of the clot itself was not painful. The injury was in the front of my leg but the clot was in the back of the calf. The actual clot location was not red or swollen. But it was there, and life-threatening.

They told me, in absolutely no uncertain terms, as they started the blood thinners, that I was lucky to be alive and un-impaired – unless of course you consider my innate stubbornness as an impairment.

I learned that clots, once formed, take about 6 months to dissolve and reabsorb into your body – and the entire time you are a walking time bomb, hoping the clot doesn’t decide to break free and make a mad dash for someplace else in your body like a batter running for home plate.

I’m updating my will, just in case.

Who is at Risk?

Everyone is at risk for blood clots. Everyone needs to be able to clot so we don’t bleed to death from a hangnail.

If you sustain an injury, you are at risk for a clot leaving its source of origin, so be vigilant. Clots often form in legs, are known at DVTs (deep vein thrombosis), but not always. And people over 30 are at higher risk than younger people.

Risks include:

  • Sitting for extended periods, especially in cramped quarters
  • Crossing your legs
  • Wearing constrictive clothing from the waist down
  • Long car or plane trips
  • Oral contraceptives
  • Hormone replacement therapy
  • Smoking
  • Surgery
  • Age
  • Immobility
  • Dehydration
  • Caffeine

More than 400,000 Americans develop DVTs each year. Of those, when clots break loose and lodge in the lungs, more than one third of the people die, and those deaths exceed the number who die from AIDS and breast cancer, combined.

Certainly not a trivial problem.

Please see this article by WedMD about preventing clots during travel.

Air travel, in particular, increases the risk of clots. According to the American Association of Hematology, your risk of developing a blood clot during air travel is increased by the following:

  • Use of oral contraceptives
  • Pregnancy
  • Cancer
  • Recent surgery
  • Older age
  • Obesity
  • History of previous blood clots
  • Restrictive seats
  • Genetic predisposition to blood clots

Yes, your genes play a part here too.

Let’s take a look.

About the Genetics

At one time, on the V3 version of their product, before the FDA issue in November 2013, 23andMe reported on susceptibility for DVTs. In the V3 report, three genes were tested. People who tested under the V3 version can find their information about DVTs in their archived health reports. I had no increased susceptibility in either of the three genetic locations tested.

23andMe no longer provides information as detailed in the current version, but they do provide something in the V4 version.

People who tested more recently under the V4 platform, since November 2013, receive the results from two locations associated with clotting.

You’ll find this under “Reports, “ then “Genetic Health Risks” then “Hereditary Thrombophilia” where only two genes are tested and reported to consumers.

23andMe follows this information by stating, more than once, that this test is limited, does NOT test for all possible variants and that the variants are most commonly found in people of European descent.

They also emphatically state that other factors, such as lifestyle and environment can influence blood clotting, and that even if you don’t have the variant, you can still potentially develop clots. I’m the perfect example of that.

Interestingly, they state that about 1 in 20 people of European descent carry one of these genetic variants.

One in 20 is a LOT of people.

I wanted to know more.

Next, I utilized Promethease.com to see if I carried any additional known high risk clotting variants. I uploaded my Genos Exome file, because that test offers the greatest coverage of all the autosomal tests I’ve taken. However, you can upload autosomal raw data from tests at Family Tree DNA, Ancestry and/or 23andMe. Yes, that “and” was supposed to be in there. You can upload multiple files for Promethease to combine in order to provide you with the most comprehensive report possible. The cost is $5 for one file or up to $10 for multiple or large files. Very inexpensive.

One note, I don’t recommend that you use the imputed dna.land file, because imputed DNA is not your DNA, but presumed additional DNA based on what most people carry in various locations – added to your test.

I’ll be writing once again about Promethease shortly, but the answer is, no, I don’t have any high or increased risk variants in the 6 locations that Promethease reports on relative to clotting.

While this is somewhat of a relief, please do understand that medical discoveries continue to be made every single day, and it’s likely that there are clotting variants yet to be discovered.

If you have questions about the medical or genetic aspect of blood clots, DVTs and risk, especially related to flying, talk to your doctor. My physician provided me with some advice, but every person’s advice from their physician will differ based on their own individual circumstances that include variables such as age, medication and other diagnoses.

While the lack of known genetic clotting risk removes one worrisome factor, that doesn’t mean the risk from clots is removed, nor does an increased risk mean that one of those pesky clots will attack you.

What’s Next?

I’m going to be fine. I’m too darned stubborn for anything else. Plus, I’m following doctor’s orders. Yes, really.

There’s nothing to motivate compliance like knowing the grim reaper is eyeing you with unholy desire.

I’m still planning to go to Dublin in October (assuming the doctor says I can go) – and I will NOT be flying Air France, guaranteed. Furthermore, I will be upgrading to business class where I can easily stand up every hour and move freely.

In deference to my seatmates, I’ll be attempting to reserve an aisle seat.

I will also be getting a prescription pair of support hose to help prevent clots. BTW – support hose are NOT just for woman. Men, no one will know that you are wearing them except for the TSA agent when you get the lucky strip search.

Considerations

Why am I sharing this with you? I don’t want you to find yourself in a similar situation, so I’m compiling a list of travel considerations that everyone should think about and prepare for when they are planning an adventure, especially out of the country and particularly in a location where the native language is not English.

  • Car Insurance – is likely not valid outside of the US, including our neighboring Canada and Mexico. Check before leaving and see what you need to do if taking your vehicle out of the country. If you’re renting a car, your auto insurance (probably) won’t cover that either, so take the extra insurance offered at the car rental location.
  • Understand what documentation you will need to return to the US – and what you can and cannot bring across the border in either direction.
  • Health Insurance – is yours valid out of the country, and for what, where and under what circumstances?
  • Health Insurance – what steps do you need to take if a problem arises, and is there a 24-hour international 800 number?
  • What kind of health care do the places where you will be traveling have?
  • What happens to travelers with health emergencies in the locations where you will be traveling?
  • What kind of arrangements does your tour operator provide? For example, cruises at sea have an on-board ship’s doctor. On my river cruise, there wasn’t even aspirin, Tylenol or motion sickness medication available on board.
  • What will you do if you need to communicate with someone in another language? Note that iPhones have language translation apps.
  • If you are on an organized tour, what will happen to you should you and a travel companion have to leave the tour? Will you be able to catch up, and how? What kind of assistance will the travel company or tour operator provide you to rejoin the tour again?
  • Consider trip insurance that provides you with the ability to cancel the trip. Understand the provisions, meaning under what circumstances, and when, you can cancel.
  • Understand the provisions of your trip insurance for unexpected happenings during the trip – what is covered and what is not.
  • I don’t know that trip insurance is available for privately arranged flights and hotel stays – meaning those not made through cruise agencies and tour operators. I do know that I’ve since discovered that my hotel reservations made through booking.com and for my airfare booked through the airlines three months in advance for October are both nonrefundable/nontransferrable – even two months in advance. Situations like this make travel arrangements something you need to think twice about, and balance the need for booking early to procure rooms or a seat on the flight, versus waiting and not risking the entire amount of the flight and hotel reservation if something goes wrong between now and then. Makes optional travel much less appealing, doesn’t it.
  • Does your travel companion, if you have one, know your health history, prescriptions you are taking and diagnoses? If not, carry a one page document with you which could be translated into another language – including the phone number and name of your primary care physician.
  • If you have a health issue, does your travel companion’s travel insurance cover them during the time that they are accompanying you? Does yours? They won’t be admitted to a hospital, but will have to be staying unexpectedly in a hotel, in a location where they aren’t the least bit familiar.
  • When you fly, get up and walk every hour on the hour. Yes, seriously. It doesn’t matter how much you irritate your seat mates. Do butt squeezes (on yourself, not your seatmate) and move your legs.
  • Don’t drink alcohol or caffeine within 24 hours of your flight. Do drink water during the trip. Wear compression hose, but not ones that bind at the top of the hose.
  • Notify your credit card companies that you will be traveling, when and where to avoid issues when charging.  This is good advice traveling within the US too.
  • Check here for more tips.

If you think there is any possibility that you have a health issue, especially a blood clot – don’t wait. I was insanely lucky. I thought I was OK, but I wasn’t. My leg did not get better within the time it should have, and the leg swelled below the knee area where the injury was sustained. Clots are silent killers – lurking stealthily until they strike with vicious, disabling and often fatal results.

The Last Word

There’s something else extremely unique about the island of Vlieland.

Poetry.

And tire tracks.

Actually, poetry in tire tracks. Inscribed in the actual tire tread.

Special tires have been created to reflect the poetry of island poet, Gerda Posthumus.

You can find this poetry along the deserted beaches, on the “other side” of the protective dune.

This photo shows the poetry on the deserted beach, and the island of Texel in the distance where my ancestor is buried.

What an utterly beautiful and jaw dropping discovery.

Who expects to discover poetry in tire tracks on a deserted beach on an island 30 miles out to sea?

How prescient, with Texel in the distance.

The poem?

According to Yvette, it says:

What makes the deepest impression

Will be touched by the water.

Let no man disturb.

The sea will have the last word.

Yes, indeed, the sea.

Just ask my ancestor, buried on Texel.

Or my ancestors buried on Vlieland, perhaps in the part of the island consumed by the sea, where the original Anabaptist Mennonite community was located.

The sea, reaching across time immemorial – touching them, then, in death.

Touching my ancestor, in life, as Janke Gerrits rode on the ship to her new life on the mainland as a bride preparing to marry in 1665.

Three generations later her great-granddaughter’s birth was commemorated with that lovely silver spoon. In another four generations, her descendants climbed aboard a ship, once again, still as Mennonites, sailing on to America to begin a new life in Indiana.

And then, three more generations later, there’s me, yet alive, thankfully, having returned to find those ancestors who “reached out” to me in their own special way. Was it, perhaps, Janke Gerrits who was born on Vlieland who tripped me up, saying, “Hey, look, it’s me. I’m here. Right HERE.This house. Whoa! Stop!”  Oops.

Wouldn’t it be something if that toe-grabbing ancestor trap baited with chocolate thingys was in front of her house?

Time, with the help of Yvette, will tell.

______________________________________________________________________

Standard Disclosure

This standard disclosure will now appear at the bottom of every article in compliance with the FTC Guidelines.

Hot links are provided to Family Tree DNA, where appropriate. If you wish to purchase one of their products, and you click through one of the links in an article to Family Tree DNA, or on the sidebar of this blog, I receive a small contribution if you make a purchase. Clicking through the link does not affect the price you pay. This affiliate relationship helps to keep this publication, with more than 850 articles about all aspects of genetic genealogy, free for everyone.

I do not accept sponsorship for this blog, nor do I write paid articles, nor do I accept contributions of any type from any vendor in order to review any product, etc. In fact, I pay a premium price to prevent ads from appearing on this blog.

When reviewing products, in most cases, I pay the same price and order in the same way as any other consumer. If not, I state very clearly in the article any special consideration received. In other words, you are reading my opinions as a long-time consumer and consultant in the genetic genealogy field.

I will never link to a product about which I have reservations or qualms, either about the product or about the company offering the product. I only recommend products that I use myself and bring value to the genetic genealogy community. If you wonder why there aren’t more links, that’s why and that’s my commitment to you.

Thank you for your readership, your ongoing support and for purchasing through the affiliate link if you are interested in making a purchase at Family Tree DNA.

2016 Genetic Genealogy Retrospective

In past years, I’ve written a “best of” article about genetic genealogy happenings throughout the year. For several years, the genetic genealogy industry was relatively new, and there were lots of new tools being announced by the testing vendors and others as well.

This year is a bit different. I’ve noticed a leveling off – there have been very few announcements of new tools by vendors, with only a few exceptions.  I think genetic genealogy is maturing and has perhaps begun a new chapter.  Let’s take a look.

Vendors

Family Tree DNA

Family Tree DNA leads the pack this year with their new Phased Family Matches which utilizes close relatives, up to third cousins, to assign your matches to either maternal or paternal buckets, or both if the individual is related on both sides of your tree.

Both Buckets

They are the first and remain the only vendor to offer this kind of feature.

Phased FF2

Phased Family Matching is extremely useful in terms of identifying which side of your family tree your matches are from. This tool, in addition to Family Tree DNA’s nine other autosomal tools helps identify common ancestors by showing you who is related to whom.

Family Tree DNA has also added other features such as a revamped tree with the ability to connect DNA results to family members.  DNA results connected to the tree is the foundation for the new Phased Family Matching.

The new Ancient Origins feature, released in November, was developed collaboratively with Dr. Michael Hammer at the University of Arizona Hammer Lab.

Ancient European Origins is based on the full genome sequencing work now being performed in the academic realm on ancient remains. These European results fall into three primary groups of categories based on age and culture.  Customer’s DNA is compared to the ancient remains to determine how much of the customer’s European DNA came from which group.  This exciting new feature allows us to understand more about our ancestors, long before the advent of surnames and paper or parchment records. Ancient DNA is redefining what we know, or thought we knew, about population migration.

2016-ancient-origins

You can view Dr. Hammer’s presentation given at the Family Tree DNA Conference in conjunction with the announcement of the new Ancient Origins feature here.

Family Tree DNA maintains its leadership position among the three primary vendors relative to Y DNA testing, mtDNA testing and autosomal tools.

Ancestry

In May of 2016, Ancestry changed the chip utilized by their tests, removing about 300,000 of their previous 682,000 SNPs and replacing them with medically optimized SNPs. The rather immediate effect was that due to the chip incompatibility, Ancestry V2 test files created on the new chip cannot be uploaded to Family Tree DNA, but they can be uploaded to GedMatch.  Family Tree DNA is working on a resolution to this problem.

I tested on the new Ancestry V2 chip, and while there is a difference in how much matching DNA I share with my matches as compared to the V1 chip, it’s not as pronounced as I expected. There is no need for people who tested on the earlier chip to retest.

Unfortunately, Ancestry has remained steadfast in their refusal to implement a chromosome browser, instead focusing on sales by advertising the ethnicity “self-discovery” aspect of DNA testing.

Ancestry does have the largest autosomal data base but many people tested only for ethnicity, don’t have trees or have private trees.  In my case, about half of my matches fall into that category.

Ancestry maintains its leadership position relative to DNA tree matching, known as a Shared Ancestor Hint, identifying common ancestors in the trees of people whose DNA matches.

ancestry-common-ancestors

23andMe

23andMe struggled for most of the year to meet a November 2015 deadline, which is now more than a year past, to transition its customers to the 23andMe “New Experience” which includes a new customer interface. I was finally transitioned in September 2016, and the experience has been very frustrating and extremely disappointing, and that’s putting it mildly. Some customers, specifically international customers, are still not transitioned, nor is it clear if or when they will be.

I tested on the 23andMe older V3 chip as well as their newer V4 chip. After my transition to the New Experience, I compared the results of the two tests. The new security rules incorporated into the New Experience meant that I was only able to view about 25% of my matches (400 of 1651(V3) matches or 1700 (V4) matches). 23andMe has, in essence, relegated themselves into the non-player status for genetic genealogy, except perhaps for adoptees who need to swim in every pool – but only then as a last place candidate. And those adoptees had better pray that if they have a close match, that match falls into the 25% of their matches that are useful.

In December, 23andMe began providing segment information for ethnicity segments, except the parental phasing portion does not function accurately, calling into question the overall accuracy of the 23andme ethnicity information. Ironically, up until now, while 23andMe slipped in every other area, they had been viewed at the best, meaning most accurate, in terms of ethnicity estimates.

New Kids on the Block

MyHeritage

In May of 2016, MyHeritage began encouraging people who have tested at other vendors to upload their results. I was initially very hesitant, because aside from GedMatch that has a plethora of genetic genealogy tools, I have seen no benefit to the participant to upload their DNA anyplace, other than Family Tree DNA (available for V3 23andMe and V1 Ancestry only).

Any serious genealogist is going to test at least at Family Tree DNA and Ancestry, both, and upload to GedMatch. My Heritage was “just another upload site” with no tools, not even matching initially.

However, in September, MyHeritage implemented matching, although they have had a series of what I hope are “startup issues,” with numerous invalid matches, apparently resulting from their usage of imputation.

Imputation is when a vendor infers what they think your DNA will look like in regions where other vendors test, and your vendor doesn’t. The best example would be the 300,000 or so Ancestry locations that are unique to the Ancestry V2 chip. Imputation would result in a vendor “inferring” or imputing your results for these 300,000 locations based on…well, we don’t exactly know based on what. But we do know it cannot be accurate.  It’s not your DNA.

In the midst of this, in October, 23andMe announced on their forum that they had severed a previous business relationship with MyHeritage where 23andMe allowed customers to link to MyHeritage trees in lieu of having customer trees directly on the 23andMe site.  This approach had been problematic because customers are only allowed 250 individuals in their tree for free, and anything above that requires a MyHeritage subscription.  Currently 23andMe has no tree capability.

It appears that MyHeritage refined their DNA matching routines at least somewhat, because many of the bogus matches were gone in November when they announced that their beta was complete and that they were going to sell their own autosomal DNA tests. However, matching issues have not disappeared or been entirely resolved.

While Family Tree DNA’s lab will be processing the MyHeritage autosomal tests, the results will NOT be automatically placed in the Family Tree DNA data base.

MyHeritage will be doing their own matching within their own database. There are no comparison tools, tree matching or ethnicity estimates today, but My Heritage says they will develop a chromosome browser and ethnicity estimates. However, it is NOT clear whether these will be available for free to individuals who have transferred their results into MyHeritage or if they will only be available to people who tested through MyHeritage.

2016-myheritage-matches

For the record, I have 28 matches today at MyHeritage.

2016-myheritage-second-match

I found that my second closest match at MyHeritage is also at Ancestry.

2016-myheritage-at-ancestry

At MyHeritage, they report that I match this individual on a total of 64.1 cM, across 7 segments, with the largest segment being 14.9 cM.

Ancestry reports this same match at 8.3 cM total across 1 segment, which of course means that the longest segment is also 8.3 cM.

Ancestry estimates the relationship as 5th to 8th cousin, and MyHeritage estimates it as 2nd to 4th.

While I think Ancestry’s Timber strips out too much DNA, there is clearly a HUGE difference in the reported results and the majority of this issue likely lies with the MyHeritage DNA imputation and matching routines.

I uploaded my Family Tree DNA autosomal file to MyHeritage, so MyHeritage is imputing at least 300,000 SNPs for me – almost half of the SNPs needed to match to Ancestry files.  They are probably imputing that many for my match’s file too, so that we have an equal number of SNPs for comparison.  Combined, this would mean that my match and I are comparing 382,000 actual SNPs that we both tested, and roughly 600,000 SNPs that we did not test and were imputed.  No wonder the MyHeritage numbers are so “off.”

My Heritage has a long way to go before they are a real player in this arena. However, My Heritage has potential, as they have a large subscriber base in Europe, where we desperately need additional testers – so I’m hopeful that they can attract additional genealogists that are willing to test from areas that are under-represented to date.

My Heritage got off to a bit of a rocky start by requiring users to relinquish the rights to their DNA, but then changed their terms in May, according to Judy Russell’s blog.

All vendors can change their terms at any time, in a positive or negative direction, so I would strongly encourage all individuals considering utilizing any testing company or upload service to closely read all the legal language, including Terms and Conditions and any links found in the Terms and Conditions.

Please note that MyHeritage is a subscription genealogy site, similar to Ancestry.  MyHeritage also owns Geni.com.  One site, MyHeritage, allows individual trees and the other, Geni, embraces the “one world tree” model.  For a comparison of the two, check out Judy Russell’s articles, here and here.  Geni has also embraced DNA by allowing uploads from Family Tree DNA of Y, mitochondrial and autosomal, but the benefits and possible benefits are much less clear.

If the MyHeritage story sounds like a confusing soap opera, it is.  Let’s hope that 2017 brings both clarity and improvements.

Living DNA

Living DNA is a company out of the British Isles with a new test that purports to provide you with a breakdown of your ethnicity and the locations of your ancestral lines within 21 regions in the British Isles.  Truthfully, I’m very skeptical, but open minded.

They have had my kit for several weeks now, and testing has yet to begin.  I’ll write about the results when I receive them.  So far, I don’t know of anyone who has received results.

2016-living-dna

Genos

I debated whether or not I should include Genos, because they are not a test for genealogy and are medically focused. However, I am including them because they have launched a new model for genetic testing wherein your full exome is tested, you receive the results along with information on the SNPs where mutations are found. You can then choose to be involved with research programs in the future, if you wish, or not.

That’s a vastly different model that the current approach taken by 23andMe and Ancestry where you relinquish your rights to the sale of your DNA when you sign up to test.  I like this new approach with complete transparency, allowing the customer to decide the fate of their DNA. I wrote about the Genos test and the results, here.

Third Parties

Individuals sometimes create and introduce new tools to assist genealogists with genetic genealogy and analysis.

I have covered these extensively over the years.

GedMatch, WikiTree, DNAGedcom.com and Kitty Cooper’s tools remain my favorites.

I love Kitty’s Ancestor Chromosome Mapper which maps the segments identified with your ancestors on your chromosomes. I just love seeing which ancestors’ DNA I carry on which chromosomes.  Somehow, this makes me feel closer to them.  They’re not really gone, because they still exist in me and other descendants as well.

Roberta's ancestor map2

In order to use Kitty’s tool, you’ll have to have mapped at least some of your autosomal DNA to ancestors.

The Autosomal DNA Segment Analyzer written by Don Worth and available at DNAGedcom is still one of my favorite tools for quick, visual and easy to understand segment matching results.

ADSA Crumley cluster

GedMatch has offered a triangulation tool for some time now, but recently introduced a new Triangulation Groups tool.

2016-gedmatch-triangulation-groups

I have not utilized this tool extensively but it looks very interesting. Unfortunately, there is no explanation or help function available for what this tool is displaying or how to understand and interpret the results. Hopefully, that will be added soon, as I think it would be possible to misinterpret the output without educational material.

GedMatch also introduced their “Evil Twin” tool, which made me laugh when I saw the name.  Using parental phasing, you can phase your DNA to your parent or parents at GedMatch, creating kits that only have your mother’s half of your DNA, or your father’s half.  These phased kits allow you to see your matches that come from that parent, only.  However, the “Evil Twin” feature creates a kit made up of the DNA that you DIDN’T receive from that parent – so in essence it’s your other half, your evil twin – you know, that person who got blamed for everything you “didn’t do.”  In any case, this allows you to see the matches to the other half of your parent’s DNA that do not show up as your matches.

Truthfully, the Evil Twin tool is interesting, but since you have to have that parent’s DNA to phase against in the first place, it’s just as easy to look at your parent’s matches – at least for me.

Others offer unique tools that are a bit different.

DNAadoption.com offers tools, search and research techniques, especially for adoptees and those looking to identify a parent or grandparents, but perhaps even more important, they offer genetic genealogy classes including basic and introductory.

I send all adoptees in their direction, but I encourage everyone to utilize their classes.

WikiTree has continued to develop and enhance their DNA offerings.  While WikiTree is not a testing service nor do they offer autosomal data tools like Family Tree DNA and GedMatch, they do allow individuals to discover whether anyone in their ancestral line has tested their Y, mitochondrial or autosomal DNA.

Specifically, you can identify the haplogroup of any male or female ancestor if another individual from that direct lineage has tested and provided that information for that ancestor on WikiTree.  While I am generally not a fan of the “one world tree” types of implementations, I am a fan of WikiTree because of their far-sighted DNA comparisons, the fact that they actively engage their customers, they listen and they expend a significant amount of effort making sure they “get it right,” relative to DNA. Check out WikiTree’s article,  Putting DNA Results Into Action, for how to utilize their DNA Features.

2016-wikitree-peter-roberts

Thanks particularly to Chris Whitten at WikiTree and Peter Roberts for their tireless efforts.  WikiTree is the only vendor to offer the ability to discover the Y and mtDNA haplogroups of ancestors by searching trees.

All of the people creating the tools mentioned above, to the best of my knowledge, are primarily volunteers, although GedMatch does charge a small subscription service for their high end tools, including the triangulation and evil twin tools.  DNAGedcom does as well.  Wikitree generates some revenue for the site through ads on pages of non-members. DNAAdoption charges nominally for classes but they do have need-based scholarships. Kitty has a donation link on her website and all of these folks would gladly accept donations, I’m sure.  Websites and everything that goes along with them aren’t free.  Donations are a nice way to say thank you.

What Defined 2016

I have noticed two trends in the genetic genealogy industry in 2016, and they are intertwined – ethnicity and education.

First, there is an avalanche of new testers, many of whom are not genetic genealogists.

Why would one test if they weren’t a genetic genealogist?

The answer is simple…

Ethnicity.

Or more specifically, the targeted marketing of ethnicity.  Ethnicity testing looks like an easy, quick answer to a basic human question, and it sells kits.

Ethnicity

“Kim just wanted to know who she was.”

I have to tell you, these commercials absolutely make me CRINGE.

Yes, they do bring additional testers into the community, BUT carrying significantly misset expectations. If you’re wondering about WHY I would suggest that ethnicity results really cannot tell you “who you are,” check out this article about ethnicity estimates.

And yes, that’s what they are, estimates – very interesting estimates, but estimates just the same.  Estimates that provide important and valid hints and clues, but not definitive answers.

ESTIMATES.

Nothing more.

Estimates based on proprietary vendor algorithms that tend to be fairly accurate at the continental level, and not so much within continents – in particular, not terribly accurate within Europe. Not all of this can be laid a the vendor’s feet.  For example, DNA testing is illegal in France.  Not to mention, genetic genealogy and population genetics is still a new and emerging field.  We’re on the frontier, folks.

The ethnicity results one receives from the 3 major vendors (Ancestry, Family Tree DNA and 23andMe) and the various tools at GedMatch don’t and won’t agree – because they use different reference populations, different matching routines, etc.  Not to mention people and populations move around and have moved around.

The next thing that happens, after these people receive their results, is that we find them on the Facebook groups asking questions like, “Why doesn’t my full blooded Native American grandmother show up?” and “I just got my Ancestry results back. What do I do?”  They mean that question quite literally.

I’m not making fun of these people, or light of the situation. Their level of frustration and confusion is evident. I feel sorry for them…but the genetic genealogy community and the rest of us are left with applying ointment and Band-Aids.  Truthfully, we’re out-numbered.

Because of the expectations, people who test today don’t realize that genetic testing is a TOOL, it’s not an ANSWER. It’s only part of the story. Oh, and did I mention, ethnicity is only an ESTIMATE!!!

But an estimate isn’t what these folks are expecting. They are expecting “the answer,” their own personal answer, which is very, very unfortunate, because eventually they are either unhappy or blissfully unaware.

Many become unhappy because they perceive the results to be in error without understanding anything about the technology or what information can reasonably be delivered, or they swallow “the answer” lock stock and barrel, again, without understanding anything about the technology.

Ethnicity is fun, it isn’t “bad” but the results need to be evaluated in context with other information, such as Y and mitochondrial haplogroups, genealogical records and ethnicity results from the other major testing companies.

Fortunately, we can recruit some of the ethnicity testers to become genealogists, but that requires education and encouragement. Let’s hope that those DNA ethnicity results light the fires of curiosity and that we can fan those flames!

Education

The genetic genealogy community desperately needs educational resources, in part as a result of the avalanche of new testers – approximately 1 million a year, and that estimate may be low. Thankfully, we do have several education options – but we can always use more.  Unfortunately, the learning curve is rather steep.

My blog offers just shy of 800 articles, all key word searchable, but one has to first find the blog and want to search and learn, as opposed to being handed “the answer.”

Of course, the “Help” link is always a good place to start as are these articles, DNA Testing for Genealogy 101 and Autosomal DNA Testing 101.  These two articles should be “must reads” for everyone who has DNA tested, or wants to, for that matter.  Tips and Tricks for Contact Success is another article that is immensely helpful to people just beginning to reach out.

In order to address the need for basic understanding of autosomal DNA principles, tools and how to utilize them, I began the “Concepts” series in February 2016. To date I offer the following 15 articles about genetic genealogy concepts. To be clear, DNA testing is only the genetic part of genetic genealogy, the genealogical research part being the second half of the equation.

The Concepts Series

Concepts – How Your Autosomal DNA Identifies Your Ancestors

Concepts – Identical By Descent, State, Population and Chance

Concepts – CentiMorgans, SNPs and Pickin’ Crab

Concepts – Parental Phasing

Concepts – Y DNA Matching and Connecting With Your Paternal Ancestor

Concepts – Downloading Autosomal Data From Family Tree DNA

Concepts – Managing Autosomal DNA Matches – Step 1 – Assigning Parental Sides

Concepts – Genetic Distance

Concepts – Relationship Predictions

Concepts – Match Groups and Triangulation

Concepts – Sorting Spreadsheets for Autosomal DNA

Concepts – Managing Autosomal DNA Matches – Step 2 – Updating Matching Spreadsheets, Bucketed Family Finder Matches and Pileups

Concepts – Why DNA Testing the Oldest Family Members Is Critically Important

Concepts – Undocumented Adoptions Versus Untested Y Lines

My blog isn’t the only resource of course.

Kelly Wheaton provides 19 free lessons in her Beginners Guide to Genetic Genealogy.

Other blogs I highly recommend include:

Excellent books in print that should be in every genetic genealogist’s library:

And of course, the ISOGG Wiki.

Online Conference Resources

The good news and bad news is that I’m constantly seeing a genetic genealogy seminar, webinar or symposium hosted by a group someplace that is online, and often free. When I see names I recognize as being reputable, I am delighted that there is so much available to people who want to learn.

And for the record, I think that includes everyone. Even professional genetic genealogists watch these sessions, because you just never know what wonderful tidbit you’re going to pick up.  Learning, in this fast moving field, is an everyday event.

The bad news is that I can’t keep track of everything available, so I don’t mean to slight any resource.  Please feel free to post additional resources in the comments.

You would be hard pressed to find any genealogy conference, anyplace, today that didn’t include at least a few sessions about genetic genealogy. However, genetic genealogy has come of age and has its own dedicated conferences.

Dr. Maurice Gleeson, the gentleman who coordinates Genetic Genealogy Ireland films the sessions at the conference and then makes them available, for free, on YouTube. This link provides a list of the various sessions from 2016 and past years as well. Well worth your time!  A big thank you to Maurice!!!

The 19 video series from the I4GG Conference this fall is now available for $99. This series is an excellent opportunity for genetic genealogy education.

As always, I encourage project administrators to attend the Family Tree DNA International Conference on Genetic Genealogy. The sessions are not filmed, but the slides are made available after the conference, courtesy of the presenters and Family Tree DNA. You can view the presentations from 2015 and 2016 at this link.

Jennifer Zinck attended the conference and published her excellent notes here and here, if you want to read what she had to say about the sessions she attended. Thankfully, she can type much faster and more accurately than I can! Thank you so much Jennifer.

If you’d like to read about the unique lifetime achievement awards presented at the conference this year to Bennett Greenspan and Max Blankfeld, the founders of Family Tree DNA, click here. They were quite surprised!  This article also documents the history of genetic genealogy from the beginning – a walk down memory lane.

The 13th annual Family Tree DNA conference which will be held November 10-12, 2017 at the Hyatt Regency North Houston. Registration is always limited due to facility size, so mark your calendars now, watch for the announcement and be sure to register in time.

Summary

2016 has been an extremely busy year. I think my blog has had more views, more comments and by far, more questions, than ever before.

I’ve noticed that the membership in the ISOGG Facebook group, dedicated to genetic genealogy, has increased by about 50% in the past year, from roughly 8,000 members to just under 12,000. Other social media groups have been formed as well, some focused on specific aspects of genetic genealogy, such as specific surnames, adoption search, Native American or African American heritage and research.

The genetic aspect of genealogy has become “normal” today, with most genealogists not only accepting DNA testing, but embracing the various tools and what they can do for us in terms of understanding our ancestors, tracking them, and verifying that they are indeed who we think they are.

I may have to explain the three basic kinds of DNA testing and how they are used today, but no longer do I have to explain THAT DNA testing for genealogy exists and that it’s legitimate.

I hope that each of us can become an ambassador for genetic genealogy, encouraging others to test, with appropriate expectations, and helping to educate, enlighten and encourage. After all, the more people who test and are excited about the results, the better for everyone else.

Genetic genealogy is and can only be a collaborative team sport.

Here’s wishing you many new cousins and discoveries in 2017.

Happy New Year!!!

Genos – A Medically Focused DNA Exome Test

On June 21, 2016, I placed an order for a DNA test with a new company, Genos at http://www.genosresearch.com. The first week of October I received my results.

Genos is a new type of testing company, focused not on genealogy, but on the human exome and medical conditions. Of course, that doesn’t mean that the genetic genealogy community might not find a way to utilize these tests in the future – but today this test is not useful genealogically.

A typical genetic genealogy autosomal test tests between roughly 500,000 and 900,000 locations to compare to others to determine kinship. These are the most variable locations in our genome, the ones most likely to differ from each other and be genealogically useful.

Exome testing, on the other hand, tests 50 million locations – the ones most often medically relevant and the ones we know the most about. Testing the 99% or so of our genome that is exactly like every other human is pointless, for either genetic genealogy or medicine.

What is an Exome?

What is the exome? Genos explains.

genos1

genos2

Let’s step through the ordering process, then look at my results. They are very interesting.

What is Genos?

Before ordering, I did a bit of research on what Genos offers, what makes them different, and what kind of potential they might have to help me understand my own genes and conditions that makes me unique.

Let’s take a look.

Founders

Genos was founded by these two men.

genos3

The next tab is Values, and I’m really impressed, especially with number 4, below.

genos4

And the Genos Vision:

genos5

genos6

Let’s move to the Product page.

Product

genos7

genos8

genos9

genos10

genos11

Ordering

genos12

genos13

genos14

Your DNA at Genos is yours, entirely, and you can choose when, where and if you want to participate in studies, unlike Ancestry and 23andMe where the consent you MUST AGREE TO in order to activate your kit includes allowing them to sell and profit from your DNA.

Family Tree DNA does NOT sell your DNA. Family Tree DNA does not want the genetic genealogy community to associate genetic genealogy testing with medical testing, because of concerns that it might discourage some people from testing for genealogy.

genos15

genos16

Before ordering, as with any DNA sequencing product or service, please read the Genos Terms of Service here. The Privacy Policy is here and the Terms of Use are here. These are all actually different parts of one larger document titled “Genos Legal Policies.”

As far as I’m concerned, this is the overarching important sentence:

We do not sell, lease, or rent your User Information without your explicit consent.

genos17

Also keep in mind that as with all companies, policies can and do change over time – and it’s the consumer’s responsibility to stay current with the policies of any company you do business with.

A New Business Model

Genos is trying a new business model both in terms of testing the entire exome and in terms of allowing participants to actively participate in selecting research projects, so I decided to be on the frontier of this brave new world. You pay for the sequencing, but the results are yours, forever, whether you participate in medical research projects or not, and Genos doesn’t sell your DNA or otherwise share your DNA results without your permission. You own it and you control it. Period.

I want to contribute to and facilitate research, but I want to select the research projects in which I choose to participate. I don’t feel that it’s ethically or morally right for a company to in essence capture and co-opt my DNA by holding forth the lure of my ancestors as bait. Both Ancestry and 23andMe participate in this unsavory practice. The Genos model very specifically does NOT do that.

Right now, the Genos Exome sequencing product and services are in BETA.

I was the 98th person to order this test, although I’m sure many more have ordered since June.

Let’s take a look at my results.

My Personal Logo

The first thing Genos does is to introduce you to your genome by creating a personal logo for you, if you select that option. I did, of course.

genos18

The circle twirled and locations on my chromosome lit up, like tiny fireflies. I wish I had taken a video.

genos19

Next, my unique logo, derived from my DNA, was displayed beside my name.

genos20

genos21

OK, that was fun, but now, let’s look at the data and what, as a consumer, I receive.

The Four Options

Your results are broken down into 4 categories. You can explore your genome, click on Health Identity, view the News or look at the educational Genomics 101 section.

genos22

I first spent a few minutes looking at Genomics 101 which is professional and well written. It includes chapters covering questions like, “What is a gene?”

genos23

The News section includes links to articles you may find of interest. Of course, I was dying to see my results, so I quickly moved on to the “Explore Genome” tab, where I saw the Map Your Genome page. So, let’s map my genome.

Map Your Genome

Genos compares your genome of the standardized Genome Reference Consortium reference model.

On the page, below, Genos shows me the 44,154 locations where I vary from the reference model, of which only 773 of these have known medical affiliations or mentions in medical papers. The key word here, of course, is KNOWN. The rest of the variants could be family differences, recently introduced or perhaps from generations back in time. Those locations may not be medically significant, or they may be, but we just don’t know how yet. Time and research will tell.

genos24

Out of the 50 million loci (locations) sequenced, I have 773 variants which are certainly of interest and may or may not be relevant medically.

I wondered what happens when a new variant is discovered to be medically relevant or found in a new paper. Would my 773 become 774, or is this a static page, really only relevant to today? I wrote and asked Genos, and discovered that their customer support is very prompt, courteous and helpful. Here’s what they had to say.

At no additional cost to you, as the information in ClinVar (the NIH sponsored database) is updated with new assessments and new discoveries, your data will be automatically updated through our digital experience. This ensures that you are always aware of the latest literature available.

This is great news, making this product infinitely useful (medically) into the future.

You can view all of your chromosomes with the chromosome number and the number of identified variants present on each chromosome, below.  Please note that you can click on any image to see a larger version.

genos25

Genos allows you to browse your medically relevant variants and what they may mean. The results are broken down into “Conditions” and “Traits,” as seen at right, above.

The Conditions are health related, but just because you have a mutation that may be associated in literature with a particular condition, that does NOT mean you have or will ever be diagnosed with that condition. In fact, as you can see, the literature itself is often contradictory. We don’t always understand what makes one person get a disease while another person does not.

For this reason, nearly every page that involves conditions also contains a link to genetic counselors along with cautionary messages that succinctly warn people against assuming that variant=disease. It doesn’t.

Individual Chromosomes

You can explore each chromosome individually.

genos26

I clicked on variant 1, on chromosome 1, above.

If I click on the NEXN with the right arrow, I see the display below.

genos27

If I click on the G>A which means the normal G nucleotide at this location has been replaced with an A in my case, I see the following:

genos28

I can then read more about this gene and the mutational variant.

genos29

I must tell you that I feel very empowered by having my own genetic information at my fingertips that was previously entirely unavailable to me, or available only through a medical provider, if at all.

Conditions

Moving now to the Conditions link on the right hand side of the main page, I can see the following conditions, grouped by category.

genos30

You can explore the Conditions link for conditions associated with your variants, the Traits or the Variants themselves.

By clicking on the icons, you can see how many variants you have in each category. The first category is allergies.

genos31

For example, here is one of my Conditions. I’ve chosen to share this one because you can tell by looking at my picture that I am clearly NOT albino.

genos32

Still, I carry at least one mutation associated with this condition.

Estes Publicity

Almost every single page carries this warning verbiage, which is proven by my albinism mutation and my somewhat younger photo when my hair was still its original color!

genos33

Variants

Variants are divided into groups.

genos34

Most of my findings are benign. Whew!!!

genos35

This is an example of one of my benign variants.

genos36

You can see that while this mutation is mostly benign, or green, some papers show it to fall into the other risk categories.

Please note the verbiage at the bottom of the screen.

“What is believed to be true today may be disproven tomorrow.” That’s part of why I’m participating in this type of testing.

The screen for each variant goes on to provide the links to the studies themselves, which may or may not agree, so you can read and digest for yourself. Please, unless you’re an MD, do not attempt to be your own doctor!

genos37

Traits

The Traits at Genos are the same traits that are tested and reported by other testing firms as well.

genos38

genos39

Like other genetic values, variants and results, these may or may not be accurate. My hair is very thick, as you can see from my photo, I taste bitter very well, unfortunately, and my skin is not light…at least not for someone primarily Caucasian. Some of these traits are clearly subjective. They make for interesting party conversation.

Health Identity

The next section of the website if for Health Identity. This is where you provide information about yourself and your health history. 

genos40

If you’re going to participate in this type of endeavor, it’s important to provide Genos with as much information as possible. That’s one avenue for Genos to know who would might be a good candidate for specific kinds of research.

Research

While there aren’t any research projects yet underway today, there will be in the future.

genos41

And last but not least…

Genetic Counselors

If you discover something you would like to know more about, or that concerns you, you can make contact with a genetic counselor through the Genos site.

genos42

genos43

Caveat

I am, personally, very much an advocate of genetic research, when it is preformed ethically, transparently and with full disclosure. As far as I’m concerned, Genos absolutely fits that bill.

However, if someone were prone to anxiety or hypochondria, this type of testing might not be a good fit.

I’m not prone to either, and I have a very high risk tolerance level, but I still am inclined to spend quite a bit of time looking at the variants that aren’t benign. If you are in the “don’t want to know” camp, then don’t test. Bottom line.

Let me say this again.

Don’t test if you really don’t want to know.

You cannot put the genic back into the bottle once it’s out.

genie-bottle

Exome testing is different than genetic genealogy testing and has the potential to reveal information which may be frightening or distressing to some people, which is why I shared my results with you in such detail.

Looking to the Horizon

Having said that, I find exome testing absolutely fascinating. I would like to see if my children have the same variants that I do. Did they inherit those from me or did those variants bite the dust in my generation? Are there variants that I carry one of and my children have two, meaning their father contributed one as well? What does this mean, health-wise, potentially, for my grandchildren?  What did they inherit?

Of course, today, exome comparisons between individuals are not possible at Genos (or elsewhere), but perhaps in the future?

Could this type of testing be a step forward in identifying conditions and diseases not yet “discovered” as we define them today? Some mutations affect particular individual family lines negatively, and sometimes fatally. Can exome testing help these families, if not today, then tomorrow? Exome testing certainly has that and a lot more potential.

I’m excited about being able to select and participate in research studies with the ability for the researchers to contact me to follow up many years into the future, if need be. The new Genos model allows citizens willing to have their exome sequenced the opportunity to help shape the future of medical understanding and potentially, contribute to treatments and cures – in addition to learning a great deal about their own DNA and literally what makes them tick.  Which studies you participate in and what happens to your DNA is entirely within your control.

I hope that a research project (or projects) that I participate in eradicates a disease or diseases so that my descendants will only read about the disease in history books and will hopefully know that their ancestor played a small role in disease extermination.

In the mean time, I’m very actively participating in exome testing to attempt to track and identify a fatal family mutation that has plagued one family for at least 4 generations.  Of course, we don’t yet know how successful we will be.  However, exome testing, especially at this price, holds promise that was never available before. I hope that what today is literally a life and death experiment will one day be a standard testing routine available to any family with this type of issue.  I’ll let you know the outcome in a few months.