To say that the matching policies at 23andMe are confusing is an understatement. Of course, that would imply that we could figure out what those policies are, this week, exactly. What I have been able to discern is that there is widespread confusion about the entire topic. This is my attempt to figure out which end is up, and who can see whom, under what circumstances. I feel like this is a high-tech game of Hide and Seek, a game customers should not have to be playing.
On October 17, 2014, I received this e-mail for one of the 23andMe accounts that I manage. I did not receive it for any of the other accounts that I manage at 23andMe.
When I clicked on the “can’t miss it” red block in the e-mail, it did absolutely nothing. However, by clicking on the “view as a web page” link, clicking on the “Confirm your DNA Relatives participation” took me to the 23andMe signon screen.
I signed in, but was not taken to the account in question. When I switched to that account, this is what I saw – in essence, a second warning.
I was not allowed to proceed further until I clicked on yes or no.
Of course, this begs the question of why my other accounts weren’t asked the same question. With the exception of one, they are sharing in DNA Relatives too.
It also made me wonder about the sharing with Close Relatives option.
I decided to check the DNA Relatives Option information in the Privacy/Consent settings, but there was nothing further. You can visit your consent options by clicking on the down arrow by your name, shown on the upper right hand corner of the screen shot below, and selecting “account settings.”
So, what the heck happened to the close relatives option?
It seems that 23andMe discontinued the “close relatives” opt-in or opt-out, according to their June blog article, below.
At this point, if you had not ‘opted out’ then it was assumed that you had in effect ‘opted in’ and all of your matches including your close relatives would be shown.
But then the VOX article was published in September and the proverbial stuff hit the fan.
The day of the expected default opt-in change, based on the June announcement (above), 23and Me posted a retraction of the June article, on their community forum, below.
We made a change from what we promised and I want to apologize. We promised that the roughly 350,000 customers that had not consented to see Close Relatives in our DNA Relatives feature would be automatically opted in at the end of a 30 day notification period. I understand that that was extremely exciting for many of you to have so much data potentially come your way. It was unfortunately a mistake that we promised that.
I do not think it was ever the right call to promise that we would automatically opt-in those customers. Core to our philosophy is customer choice and empowerment through data. The Close Relatives features can potentially give a customer life changing information, like the existence of an unknown sibling or the knowledge that a relative is not biologically related to them. Customers need to make their own deliberate and informed decision if they want this information. It is 23andMe’s responsibility to make sure our customers have a choice and that they understand the potential implications.
The timing of the change is unfortunate and I apologize the announcement came late on a Friday night at the end of the 30 day period. The article in Vox made me and others look into the language in the consent form and that is when I learned about the proposed changes coming to the DNA Relatives community. As 23andMe has moved from being a start up to a bigger and more mature company, I am not involved in every decision. This is a decision that should have come to my attention but it did not. We will learn from that. 23andMe is hiring a Chief Privacy Officer and that too will help us avoid these types of mistakes in the future. We are also already planning to evolve the consent process to make it simpler and more clear for customers.
Going forward, we will continue to prompt the customers that have not made a choice about Close Relatives to make a choice. We understand how important that is to you. We will do a mix of emails to these customers and pop-up prompts at login to get customers to make a choice.
I apologize again for the disappointment and for not having clearly communicated the reason for reversing course. 23andMe continues to grow and pioneer the way we think about consumers exploring their DNA. While we continue to innovate we may also err along the way. We can only promise that we will always listen to and do right by you, our customer, and will never fear having to redirect our course when it is the right thing to do.
Sincerely, Anne Wojcicki
So, now it appears that unless someone has specifically ‘opted in’ to DNA Relatives as a whole, they are automatically ‘opted out,’ a 180 degree reversal. Of course, if you were one of those 350,000 customers who received a notification about opting out, and did nothing, so that you could be opted in at the end of the 30 days referenced above, you would be thoroughly confused because you THINK you’re now opted in.
23andMe has a habit of posting information on their Forum which members must actively check, instead of sending e-mails to their customers or posting this kind of information on their blog that is sent by subscription. One of the forum followers was kind enough to point out this recent posting detailing changes that have occurred in October and the 23andMe policy moving forward.
I can find nothing on the current customer pages providing any information about these decisions or the match status of DNA Relatives/Close Relatives.
Furthermore, 23andMe is now asking some, but not everyone, who are opted in for DNA Relatives if they are sure. My account that was asked tested in 2010, so was not caught in the 2014 selection option confusion.
I feel that this methodology discourages many people from participation. It infers that there is something frightening that you ‘ought to be’ concerned about – especially if you are asked about the same topic several times.
In summary, here is, I think, what we know, as of October 16, 2014.
- Everyone will have to make a specific choice to opt-in to DNA Relatives, one way or another, after testing. If you don’t specifically opt-in, you are opted out. Consent to test apparently doesn’t count as consent for DNA Relatives.
- Clients prior to June 5, 2014 who were opted in to DNA Relatives but out of Close Relatives will be prompted to select an opt-in with close relatives included, or an opt-out entirely.
- Clients prior to June 5, 2014, who did opt-in to participate in DNA Relatives, but did not have any selection to make about “Close Relatives” will be required to confirm that they want to continue in DNA Relatives before they can proceed to see their matches. This is apparently the e-mail that I received for one of my kits. It’s still a mystery why I never received it for the others who tested even earlier and clearly before the “Close Relatives” option existed.
- Clients between June 5, 2014 and October 16, 2014 who were automatically opted in to DNA Relatives with close relatives included will also be prompted to confirm their participation in DNA Relatives and until they do confirm that option, they will not be visible nor able to view close relatives.
- New customers will be prompted to opt-in or opt-out of DNA Relatives and opt-in will no longer be the default.
- Participation in DNA Relatives will now include close relatives and that will not be a separate option.
I’m very glad to see that everyone who opts in to DNA Relatives includes close relatives. To do it any other way is not only confusing, it’s more than a little disingenuous, especially given that someone may not realize why their close matches aren’t showing. I had more than one client have a panic attack when their family member wasn’t showing as a match, especially when they were expecting to see a parent or sibling. In my opinion, having to enable the “close relatives” option caused huge problems and wholly unwarranted stress. If it’s truly gone, never to return, I’m very glad and applaud 23andMe for that decision.
The bad news is that many of the 350,000 people referred to in the September community forum posting are still anonymous, and they many not even realize it. Many probably presumed, quite logically, that because they were taking a DNA test that included matches, that they would receive matches without having to do anything further. Furthermore, they received the 30 day notification that they would be opted in if they did nothing, so they expected to be opted in. But they aren’t.
Currently, at 23andMe, you have to jump through more hoops to obtain your genealogy results than you did (when they were providing health information) to obtain your health results. I hope that the message provided to people who are making the “Opt In – Opt Out” decision can be worded a little more encouragingly and present both sides of the risk/reward coin. I would hate for their entire response to be fear based due to the tone of the selection message and the fact that they have to answer this question repeatedly – like the dreaded Alzheimer’s health question – back when 23andMe was providing health results.
Here, let me give you an example vignette:
Hi, 23andMe, I’d like to test for genealogy matches.
Great, send me $99 and you’re on the way.
Good news, your results are back. Do you want to opt into DNA Relatives? You know you could find out information about your family that is upsetting to you? It could change your family relations?
Really? Hmmm…I think I want to see. That’s why I tested.
Another e-mail: Are you sure, really positive that you want to remain in DNA Relatives? You know, you could find out really upsetting information. You can see other close relatives and they can see you.
Geeze, I don’t know….maybe not…I’ll wait till I sign on next time to deal with this.
Signing on next time….
Do you want to opt-in to DNA Relatives? You know, you could find out some really disturbing and upsetting things about your family? It could change your relationship with your family members.
After repeating this warning several times, it begins to appear like 23andMe is discouraging your participation, not informing you of risks and rewards. There is no upside mentioned, only repeated negatively framed warnings. Given that genealogy/ancestry is the only reason for the consumer to purchase this product right now, this approach seems a bit counter-intuitive and overkill. In the least, the warning should be given up front, during the purchase process, and then not constantly repeated.
However, given that 23andMe is still gathering your health information and utilizing it in their medical research, even if you opt-out or don’t opt-in to DNA Relatives, assuming you haven’t opted out of medical research as well, warning you up front would discourage a sale and would prevent them from collecting your genetic data. In essence, 23andMe doesn’t care one bit whether you opt-in or opt-out of DNA Relatives, but they care a whole lot about your money and your participation in medical research.
The constant changes and hoopla are confusing people and frightening some. Others are becoming too discouraged by a lack of positive genealogical results to continue.
23andMe was first in the game with consumer autosomal testing, but their ever-changing policies have become and remain confusing. They have done nothing to clarify publicly, leaving everyone uncertain and a little reluctant.
23andMe entered the genealogy marketspace, but they seem to be focused on protecting people from genealogy matches. This seems almost like a conflict of interest, or may be better stated, a Kobayashi Maru, or no-win situation. It seems that the health testing aspect is causing 23andMe to adopt such restrictive procedures that it’s making the genealogy aspect of their product increasingly restrictive and difficult. I’m sure this is reflective of their primary goal, which is medicine, and the fact that genealogists just happened to be interested in genetics as a tool was, for them, a happy accident that provided a source for test subjects. Genealogy is not something 23andMe is primarily interested in. I’m sure they aren’t making things difficult intentionally, but the net effect is far from encouraging.
I’m finding that their protections are barriers and the required steps are confusing for customers and self-defeating for genealogy, and they are, unfortunately, cumulative hurdles:
- Having to specifically opt-in to DNA Relatives, even after consenting to test when purchasing the product which includes matching
- Having to request to communicate with other participants
- Having to request to “share DNA”
- Having to confirm that yes, you really did want to ‘opt in’ to DNA Relatives
- About a 10% communication request response rate
- Most of the 10% of the people who do respond know little, if anything, about their genealogy, nor are they terribly interested
- Having to utilize the 23andMe corporate message system instead of communicate with your matches via e-mail
- Match limit at 1000 people unless you are communicating with more than that number. After 1000, matches fall off your list.
- Their terrible trees. Yes, I realize they have recently partnered with My Heritage, but as Judy Russell says, we’ll see.
- The misleading (health and ancestry) notation in a sharing request which frightens people as to why you want their health information, causing people to decline to share
- Constant change about who you are/aren’t seeing as matches and why
- Confusing and conflicting opt-in, opt-out information delivered on four different platforms; e-mail, on your personal page, their blog and their community forum. In essence, this means that almost everyone except the most dedicated 23andMe follower misses at least part of the information.
23andMe is approaching the point where the pain level of participation is at the threshold of no longer being worthwhile except for extraordinary cases like adoptions where the participant is desperate for any possible crumb.
I thought more about this situation, and I believe that the underlying problem is a fundamental disconnect in the focus of the two groups. 23andMe’s corporate focus is and always has been health related research, compilation and manipulation of genomic “big data.” Taking a look at their recent American Association of Human Genetics papers is a good yardstick of their corporate focus. Not one paper mentions the genealogical aspect of their business, and even the paper that does indirectly help genealogists by reducing false positive identical-by-descent segments is presented from a medical perspective. In essence, the genealogy community is a source for DNA for 23andMe. They aren’t focused on genealogy or interested in serving this community. That’s neither good nor bad…it’s just the way it is.
The genealogy community, on the other hand, is frustrated by the increasingly long list of confusing hurdles at 23andMe that people who test for genealogy must navigate before they can reap any of the potential benefits of matching for genealogical purposes. Each successive hurdle reduces the number of people who complete the course and those who make it to the end are either the died in the wool genealogists who have tested elsewhere anyway or people with little or no knowledge of their genealogy. Worst case, people who test at 23andMe for genealogy will leave with a bad taste in their mouth and never test again because, frankly, it’s neither easy nor fun.
We don’t know exactly how many people haven’t opted-in for DNA Relatives, but we can surmise some based on their publicly released information. In the September retraction, 23andMe said that there were 350,000 who had not opted in, or out. We don’t know how many have actively opted out. In their ASHG abstract, they mention that 550,000 have consented for research. That tells us that less than half of their clients are opted in for DNA Relatives, or about 200,000 (assuming no one opted out), or perhaps less now with the recent “are you sure” messages like I received. Given that only 10% of the people who DO actively opt-in for DNA Relatives respond to inquiries, that’s a whole lot of people not clearing the hurdles for one reason or another. Of their entire data base of 550,000, only about 20,000 people clear the hurdles and engage, or about 3.5%. That means that there are 530,000, or more if you include the unknown number of opt-outs, who don’t clear the hurdles.
I hope 23andMe gets their cumulative act together relative to genealogy customers. You’d think with genealogy customers being their only source of corporate revenue right now (except for government grants and venture capital), that they would be bending over backwards to make the genealogy related products and processes straightforward, accessible and easy to use. Now would be a great time for some positive changes!