Fun Friday: What To Do With Your DNA Information

Comments (Archived):

1. “The arc of society is long, but it bends towards openness”I’ve no idea what today’s results will be, but I know for sure the direction of the swing if the same question was asked again in 5 years.

   1. Indeed. I have already been somewhat public with my DNA and am thinking hard about being more public

      1. shame something with so many positive externalities for individuals and society is repressed by fear of punishment by an opportunistic unrelated party.

         1. You are implying perhaps that opportunistic is bad and shouldn’t be tolerated or encouraged. Evaluating available information prior to making a business (or life) decision is smart, not stupid and certainly not wrong. Ditto for relationships.

      2. Fred, I would urge you to check out the Personal Genomes Project [0]. It’s a Harvard-run project the goal of which is to create a free public data set of genomes, traits and health data that can be used by scientists for the greater good.They will sequence your entire genome for free if you post it publicly. A full genome sequence currently costs $1,000 and gives you much more data than 23andMe’s SNP-array based testing. 23andMe essentially gives you only several hundred thousand out of the billions of letters in your genome.Why is public sharing of genomes a good thing? The Supreme Court recently invalidated patents held on the BRCA genes, which are a common cause of breast cancer. The company that held the patents (Myriad) used to have a monopoly on diagnostic DNA testing for breast cancer — you couldn’t event get a second opinion! Now, other companies can do the testing, but they lack the historical data. Myriad has decades of data correlating DNA with health results; while others can sequence your DNA, Myriad can likely interpret it best. A public data set of DNA and health outcomes could change all of that. This information should not be silo’d.Another interesting project worth checking out is Open Human [1], which is an offshoot of the Personal Genomes Project and aims to have people share all sorts of their data for the good of science.Finally, if you want some health results now without waiting for 23andme to regain FDA approval, upload your 23andme data to Promethease [2]. It spits out an interesting health report based on data from SNPedia.[0] http://www.personalgenomes….[1] https://www.openhumans.org/%5B2%5D https://www.promethease.com/

         1. Wow – was not aware of this. Will be looking into all the links. Thank you for the info

            1. My pleasure! A caveat on the Personal Genomes Project: if you are interested in the free $1k genome sequencing, be aware that there may be a long waitlist due to funding issues. If you are more interested in the public sharing aspect, I believe you can self fund the sequencing and still share your data on their website.

            2. Good to know! Given that I live in Cambridge, I might try to stop by and see how I could get more involved.

         2. thanks. i will look into this.

            1. http://www.personalgenomes….there’s much to think about.having read through this pdf i’m even more convinced that the data needs to be blockchained in some way with my genome as the public key and my personal identity as the private key. the project would need to be rewired.

         3. Church is a pain in the Arse to get in touch with. The database exists and it isn’t clear to me how it’s being used, and the lab is unhelpful

      3. So it is a good DNA report card ?

      4. and am thinking hard about being more publicYou know for the sake of others you might want to reconsider that thought.Why? Because while it doesn’t matter for you financially and employment wise [1] what the results are, your choices and actions have the potential to influence the decisions of others. Where that info can and would have an impact.[1] If you share negative information, it’s not like you need to get life insurance. Or worry about money issues. So your risk profile is different than the average person.

      5. The only way there could be a down side is if an employer doesn’t hire you or an insurance company didn’t insure you because of your genes. Supposedly the second issue is taken care of by ObamaCare, but that may not be permanent. Perhaps laws would have to be changed.

         1. Employers legally can’t. Life insurance companies can, but not health insurance companies by law.And Obama are didn’t take care of the issue, that was before obsma’s time right after myriad launched in the 90s. Plus the federal government was sued over that law by its own employees.Furthermore, the amount we know about genetics and epigenetic, plus the actual risk model used by life insurance companies, it would be semi-logica to say they are very foolish to discriminate. The ai used in Google search is better developed than the risk models used around genetics and insurance companies, and both are probability. It’s a really expensive lawsuit waiting to happen

   2. Or maybe viewing it through the lens of causal necessity?“The arc of society technology is long, but it bends towards openness(interdependence)”

      1. We need to work more on the underlying ethical and legal frameworks, otherwise laws will have to be patched once the issues are evident.

   3. Depends on obamacare

2. i can see the benefits, and so i would say that there should be a database to allow people to search to establish if they have a DNA connection to another profile. the profiles should be ID encrypted. upon finding a connection they submit an anonymous request to the other party explaining their ‘need’ and await a response.

   1. This database and network seems like an interesting idea. People seeing how they are connected to each other – how we are one big family – might have interesting and positive social implications. I see a DNA meets blockchain opp here.My personal inclination is to go public but worry I worry about employer, and insurer (mis-)use and privacy overall.

      1. Same inclination and worries here too.

      2. In the US, GINA (the Genetic Information Nondiscrimination Act of 2008) prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions.It has some holes though. For example, while it covers health insurance, it does not cover discrimination with respect to life insurance.

   2. This is how 23andme currently works.

      1. thanks, but is it a centralised database? i don’t like that. it needs to become a distributed network.

3. what’s the 23andme business model?

   1. you pay for the sequencing

4. Could there be a way to benefit from more openness but without making it completely public, like semi-public, or something like that.

   1. blockchain, public key/ private key?

      1. yup, something like that would help.

      2. W/ DNA owner (<– what a strange concept) having control over who sees what.

      3. or to put it another way, public genome key/ private id key

   2. Yes – some kind of non-PII annonimization seems pertinent.

   3. All anonymization schemes can be broken eventually. With Dna it could be sooner than later, becuase Dna by itself is meaningless. The more patient data you have the more meaningful it is, especially in the context of family trees. Really messy to anonymize

5. Because I was working on an Ovarian Cancer Awareness project, my sister and I got tested for BRCA (The ‘Jewish’ cancer gene and same one Angelina Jolie has). My mother converted and most of my Jewish relatives who survived the holocaust lived long lives (even my Dad who died of Pancreatic cancer did so at 79 and was a lifelong smoker). I was SHOCKED to find out that our family had it (not me luckily for my kids). Now many of us have been tested and a number of people have found out they have it and are making choices that they wouldn’t have otherwise had.DNA testing can save lives. It saved my sisters…

   1. DNA testing can save lives. It saved my sisters…Can also increase the stress level over something you have no control over. Separately I have people related to me that have that BRCA gene.

      1. that’s true but the way we looked at it – knowledge is power – you can choose not to do anything but at least it’s choice ….

         1. Yeah but my point is knowledge is also anxiety. That is one of the negative aspects of testing. Because uncovering something leads to tests and waiting for results of tests and so on. Not everything falls into this box of course.

   2. Wow. Do you have to know what you’re looking for beforehand in order to find out, or does it let you scan for everything?

      1. You can get your entire genome sequenced for $1,000. (Although it costs more to then sit down with a genetic counselor who could help you interpret those results.)If you have a family history of breast cancer and are specifically worried about the BRCA mutations, there are presumably folks who specialize in testing just for that and are more experienced in interpreting the results from a clinical point of view.

         1. That’s recent

      2. If she’s ashkenazi Jewish in heritage and getting tested after family, they will test for the exact same variants as her sister. The nih has guidelines how to test ashkenazi women in the US (when you start being noncomformant and high risk and ashkenazi, you find things out)Full exome or full genome testing in this situation actually is really rare (I check regularly)Sometimes samples are kept for further testing if a new gene pops up, like Palb2.Biggest problem right now is if you get a Vus ( variation of unknown significance). The largest correct database of Vus belongs to Myriad of Supreme Court case fame, and it’s private. They claim there are only about 300 Vus that are uncategorized for brca1 or brca2, but it’s hard to double check without checking thier database

      3. I’m not sure if it would shown up in a generic test. It’s potentially hugely powerful but in the US with the health insurance issues, i’d almost be scared to have my Dna tested – it might increase my rates (or not but one wouldn’t know until afterwards)

   3. I’m jealousI’m a (mostly) uninformed negative. Breast cancer runs in my mother’s line really young. For various reasons my mom was tested 2x as a survivor – she’s definitely NOT a carrier. I have roughly 5 generations of people on my father’s side tracked, many of whom in the early days in the states had lots of kids, (including a few with 8!). So even though he’s ashkenazi, I have the luxury of checking a big database. He’s unlikely to be a carrier For Brca. ( I’m simplifying this…)Fundamentally I think I represent less than 5% of Breast and/or ovarian cancer previvors who are Also ashkenazi in the United States. inbred and an outlier, wood. (I have had actual researchers been a little to excited for me to get cancer, since it also means I’m a great genetic and epigenetic lab rat)It takes about 400 full families trees to find a strong gene. We’re not going to find that for me, even though my best shot is through genetic studies (note to self, bother Kettering again about that…) Realistically, I’d be much better off with a United health care system and mandated genetic tests and research public databases from everyone in the US.Not happening any time soon though, so I am back to arguing with my insurance company that not all mri machines are the same

6. It feels like openness is inevitable if the only deterrent is abuse by employers and insurers. Like our geo data and our web data, our participation (with technology and to some degree society) opts us in. This is a similar argument to a celebrity surrendering to paparazzi because they “opted” to walk to the grocery store. As the cost of sequencing trends towards zero the opportunity goes up exponentially. In the movie Gattaca, sequencing without permission was technically illegal, but every one did it. It was as easy as an eyelash or dead skin sucked up in a hand vac…or a fingerprint left on a sign-in iPad.

7. Were there a lot of relatives listed who had done the 23andme? It seems like it’s still such a new program. And why are you so inclined to be public with your info?

   1. yes, something like 20. i don’t know any of them other than my daughter

      1. Google them! There’s sure to be a few interesting people in the mix.

      2. Family reunion time?

8. I’ve done the 23andMe test and opted to share as much as possible! If my information can potentially help contribute and advance research I’m all for it.

9. Depends. If the results were bad I probably wouldn’t. would share it with my family for sure. Cubs no-no and a BlackHawks win last night so today can’t be bad.

10. Imagine a mega database where people have their genome, their microbiome information, combined with other things like activity, diet, medical history, and social status. (Not to mention connecting it with sensors that can measure key variables ie blood glucose, heart rate, temperature, cholesterol.) Now make all that data public so anyone can study it. This would turn medicine upside down!I’ve thought about this long and hard and it just seems like the right thing to do. So many lives could be made better, yet there are some serious concerns about making all of this information public. I wonder how much value is added when there is a persons name attached compared to just a number.

11. There is a 4th category: share it with the government, any government.

    1. Share with all governments geo-taged to your home address 🙂

12. You are touching on one of my favorite areas, Fred!Until today, genomics has been among religion and politics as things that we shouldn’t talk about at the dinner table. Thankfully, for genomics, this is starting to change. As @liad:disqus noted, the story will be quite different in five years.As Fred knows, we started to touch on some of this at New York Genome Center (www.nygemome.org), especially in conversations around how genome sequencing could be used across the entire population (e.g., newborn sequencing for all New Yorkers). There is a great public health and ultimately societal value in (1) having these data in the first place and (2) sharing these data as appropriate to help others. And there is much to be learned from population data that doesn’t (necessarily) create privacy risks.A lot has been written about whether deidentified (anonymous) genomic data is truly private. Given enough computing horsepower and analytical expertise, a complete set of genomic data might be tied back to an individual. To me, that is not that different from Palantir being able to know everything about me based on my Facebook friends list or credit card records. You know it is possible but hope it isn’t happening or at least not being used for nefarious purposes.In that context, I like the idea of something between “make it very public” and “share it with family members,” which is making the deidentified data available for research opportunities and population studies, with the option of making them available for other applications on a selective basis. Over time, especially as we see more tie-ins with systems like Apple’s ResearchKit (www.apple.com/researchkit/), there will be massive opportunities for both personal and public benefit.I would like to think that the specific benefits will outweigh the privacy risks, but clearly the latter is an area that will require discipline, diligence, and frankly policing. @Barabare:disqus has some great comments on this. (By the way, Fred, Chris Mason at Weill Cornell has done some interesting work around this and would make for a great NYC coffee if you ever have any interest. He is a super-smart, super-creative, and super-connected guy.)23andMe continues to break great ground here, as much about personal value as about public awareness. As more and more people talk about 23andMe and some of the other “recreational genomics” tools (e.g., Ancestry.com), there will be more and more openings for “serious” healthcare opportunities. Today, most people’s first exposure to genomic testing is prenatal carrier screening. Tomorrow, sadly, it will be cancer diagnostics, but we need to push access to tools like those (e.g., Foundation Medicine, OmniSeq), since they can provide huge cost and treatment improvements. The day after tomorrow, I’d like to see wellness screenings be a part of everyone’s lives. These tools will allow all of us to lead happier, healthier lives, while guiding physicians to predict, prevent, and protect more effectively.Upshot: We need people to be asking the tough questions, but we really need people to continue to drive for adoption and application of these technologies.

    1. Can I talk to you off here. I’m having trouble around cancer genomic and sequencibg and I really need to do it..

13. POTUS is here in the UK today lecturing the British that we should not vote for Brexit and continue with the surrender our sovereignty to Brussels. What a nerve.

    1. Dyslexic version of Brexit.One of my favorite stores in SF.

       1. a vote for Brexit would be a Brite X

          1. LOL, the wonders of irony in English language.So in Mgmt Sch, my International Business lecturer was an economic advisor to government politicians on EU issues. The love-hate relationship the UK has with Continental Europe is worse than the love-hate relationship the States has with Mexico.

             1. the love-hate thing is populist, and gloss. the CAP is a very nice earner for the UK’s landed class, who incidentally still run the show in the background. the political and media classes are sock puppets.

             2. Apparently Obama has just said that the UK would go to the back of the queue on trade deals with US if Brexit happens ? Thats a pretty dramatic statement.Re: “..the UK’s landed class, who incidentally still run the show in the background..” – interesting perspective.

             3. yes i caught that. not really appropriate for a foreign leader to interfere quite so openly in another nation’s affairs imho.

          2. I read about this since we chatted about it and it seems to me that leaving the EU would not be a good decision in the long term.Whats the people’s sentiment about it that you perceive there in the UK?

             1. At its core it’s issues of sovereignty, whether UK will adopt Euro, how much UK would be subsidizing the pension and other social benefits schemes of other countries, being subject to Human Rights Laws which make it difficult to deport terrorists (potential and actual) and more.Lots of emotional triggers because it touches upon individual rights and societal values and because of the various wars between the countries involved: Waterloo, Elizabeth I vs Spanish Armada, etc.* https://en.wikipedia.org/wi…* https://en.wikipedia.org/wi…* https://en.wikipedia.org/wi…Just as our DNA stores memories, so does the DNA of Europe’s individual countries.#Let it go! Let it go!# isn’t something any of the parties involved do. So they re-hash and pick at old wounds rather than solving the problems.

             2. One could think that new generations forget, but there is some form of cultural memory that persists from one generation to another.

             3. Agree with the above to a degree but would note that this shouldn’t be misread Brexit as UK insularity when the opposite is indeed the case. One of the strongest arguments for Brexit is that this allows the UK to trade openly with all countries on the planet – at the moment we can only import agricultural produce from certain (one?) African countries without prohibitive duties being imposed. Similar constraints exist for imports from many non-EU states and exports to these also. Food and household goods are more expensive as a consequence.The UK wishes to welcome the best qualified candidates from any country in the world. At the moment, visas for highly qualified non-EU citizens are severely restricted while we have to accept any or all EU citizens, qualified or not.Given that economic infrastructure is now totally global (banking, internet, communications, transport, blockchain….) it really does not make sense to tie our country to a inchoat and disfunctional regional block. Just consider this a repositioning for the 22nd century.And I haven’t even discussed how anti-democratic (not just undemocratic) and corrupt the EU institutions are….. or indeed how, due to community rules, the UK will contribute significantly more into the EU funds over the next five years if the Euro zone economies flounder further than already experienced; which they will – there’s more shit coming.

             4. A lot of GATT, NAFTA, EU etc was created before the types of trade afforded by the Web (including Blockchain) and the politicians are constantly years behind. Sure, they use tech as marketing channels but very few of them really understand it or have worked in it.Ed Vaizey is a barrister & PR person by experience. Compare this with US where the CTO is Megan Smith, a former VP of Google X (Google’s moonshots unit) and an engineer, and the Chief Data Scientist is DJ Patil, ex-Head of Data Products & Chief Scientist at LinkedIn.So when these VIPs negotiate issues related to visas for highly-qualified people and fostering tech sector, they see, speak and solve from very different first-hand experiences.I agree it would be too narrow to see Brexit as UK insularity.As much as she got flack for keeping £ sterling and created the environment for London’s fin tech dominance in Europe, Baroness Thatcher did some things right.Ack, and there was I just posting a fun photo of one of my fav stores in SF!

             5. in the general population opinion seems to be split 50/50. the outcome will be close.for the elite classes (landed, financial, corporate, political, media, et.c.) the EU is generally seen as helpful to their cause.in the short term leaving will create problems, but in the long term it could be beneficial. It will change the UK, and the UK needs to change. social mobility is minimal. that’s unhealthy.

             6. Social mobility is minimal? What happened to Labor’s mantra, “We’re all middle class now.” Doesn’t that mean there are no elite classes?

14. Interesting – also got my reports this week (we are not related). I did appreciate that 23andme gives you a fair warning that enabling “DNA Relatives” could reveal some upsetting information, but what a great feature for those who are curious.I also got a chuckle about the data telling me that I’m “unlikely” to be a sprinter. Nailed it.

15. Personally, I’m comfortable sharing my ancestry results publicly, but my health results only with family.

16. Can life insurance survive private DNA testing?Seems natural to buy life insurance if you find out that you are high risk to develop a terminal illness. If you are supporting a family, seems irresponsible not to act on bad news if you get it. But from the life insurance companies perspective, how can they afford to pay for all the new selection bias they are getting in their new DNA-informed customers? Will they figure it out in time before they write enough bad policies that they bankrupt themselves?

17. I had a DNA test several years ago through Navigenics, and it changed the way I viewed my personal risk factors and shaped the conversation with my GP. I shared the results with my wife and my GP. I would have no problem sharing with my children when they are older — or my close friends if there were a natural context for doing so.Closed/private vs open/public is an interesting question. Yes, I suppose you could open yourself up to the potential for risk and discrimination. But you also open yourself up to generosity and serendipity from those who care about you, or simply from those who have a useful perspective to share. Stay closed? You never find out. (Not unlike startups.)

18. Have no interest in taking any DNA test so I don’t even have to get into sharing it (but my reply to a comment Fred made will show what I think about that).

19. I’m waiting for the first tort action where the damages are to your DNA.

20. We’re in that strange phase here where the technology is truly promising but other systems built around it aren’t evolving as quickly, like the life insurance example. One would think that someone aware of a potential risk would proactively manage it, vs leveraging the ostrich method of keeping one’s head in the sand and hoping for the best. But alas, we don’t have the risk assessment models for that developed yet so while there are great clinical benefits to be reaped, there are also significant real-life disadvantages to consider. Christina Farr writes very well on this topic and the intersection of old codicils and new tech (http://www.fastcompany.com/… ).This is one area where I personally look abroad for better solutions. I’m in the ‘share with family and discuss w/ doctor’ camp mainly because not knowing how this information can potentially be misinterpreted by health insurers etc is giving me unease. Interesting that this is not a consideration in single payer/centralized health care scenarios at all.

    1. I agree, specially the legal codes and their related systems, their updating cadence is so out of sync with the current speed of innovation that many of today’s problems have to do with this, the clash of a dated legal corpus with reality.( The closing parentheses is breaking your link tohttp://www.fastcompany.com/… )

       1. Thanks – the perils of Disqus formatting :/

21. Public. Due to hereditary diseases. I wouldn’t want someone not to know this if they could take action in time.

22. I think the underlying problem is: If we have good stuffs, we want to show them. If we have bad stuffs, we want/need them hidden.

23. To me this is a weird question.Maybe because when/where I grew up, and my religio-ethnic background, talking about genetic testing and the results in public are totally normal to me.When I got engaged, more than a few friends asked when I was getting genetic testing, told me things like “I’m a carrier for Tay-Sachs”, and asked me if I needed recommendations for genetic counselors. I’ve gotten drunk while talking about potential types of panels with friends.And while this may sound weird to people, one of the results are major drops in children born with deadly genetic diseases. I think the Tay Sachs group in the US no longer sees 2 full blooded ashkenazi parents anymore in thier support groups because it is just so normal to talk about genetic testing.So not talking about it is weird and mildly dangerous in my book