Reasons not to reveal your DNA
internethealthreport.org
internethealthreport.org
As someone conceived with donor gametes who used Ancestry/23andme to find and build a relationship with my biological father - this is a WONDERFUL thing.
Depriving people of their genetic history is a terrible byproduct of the multi-billion-dollar fertility industry, and I personally know hundreds of people that have been terribly hurt by the pain caused by anonymous donations.
Only thing to correct - anonymous donations very much now ARE a thing of the past, not "could be." Any fertility clinic promising anonymity is knowingly lying to prospective donors and/or recipient parents.
It seems like you would not be open to contact with your hypothetical offspring.
I can't tell you how many adults I've met that have attempted to reach out to their genetic parents/donors and been met with a similar response. It's incredibly devastating for these people. I got very lucky.
No one should be helping creating life if they are not open to at least basic contact with the human beings they have created.
The system is anonymous exactly because people like the one you're replying to are willing to help provide the biological material and nothing more. Requiring communication with a person that, beyond DNA, is a complete wildcard seems like a steep barrier to donation that would significantly decline overall donations.
I would encourage you to look at some of the research - 70%+ of "anonymous" sperm donors are actually open to contact with their genetic offspring.
Optimizing for the health and welfare of intended parents while ignoring the well-being of the actual human beings that are created is incredibly short-sighted.
A decrease in the overall amount of donations is a significantly smaller problem than the pain and risk created by anonymous donations (that are, as I've said, no longer anonymous because of the existence of these websites).
Why is it inherently unethical?
Donors are willing to provide a good/service, and part of the price is sometimes their anonymity. (I am sure many don't mind either way.) I'm not sure that anonymous donation is _possible_ anymore, given DNA testing, but even if it were, I don't see how being willing to donate is unethical if one wanted to stay anonymous.
This is not just philosophical. Scientific studies show that children of anonymous donation are at higher risk of negative outcomes than other groups: https://slate.com/human-interest/2010/06/new-study-shows-spe...
The link with depression is especially troubling given that a history of family depression typically makes a man ineligible to be a sperm donor.
IMHO, the key ethical question is, how can a person (the child in question) be made party to a contract in which they have no input?
Is it unreasonable to give them full/veto choice over the matter of contacting genetic parents -- because that is the only place in the story where they have any agency? Donors & receivers have full agency at the point of exchange.
Further, if one is willing to conceptually agree that a child might have needs/rights beyond what parents (either adoptive or biological) might be willing to provide for, then one is necessarily led to seek & consider data on possible harms (emotional or otherwise) to children who do not have the choice to contact their biological parents.
Intentionally depriving someone of that right through anonymous donation is unethical.
On a broader level, I believe that taking an action that causes no harm to oneself but causes harm upon another person is unethical.
Wanting to stay anonymous has a harmful effect on the actual human beings being created here - I can cite research and/or hundreds of anecdotal conversations and relationships I have had with real-life people conceived this way.
No, it doesn't. The child has a right to "know his or her parents". It does not specifically state "biological" parents. Parents are the people who raise you and are legally responsible for you.
> I believe that taking an action that causes no harm to oneself but causes harm upon another person is unethical.
I agree with that statement in general, but don't see how this applies. If someone donates sperm anonymously, that anonymity does not cause harm to any child conceived with that sperm. That child may later really want to know where their genes come from, but that's not harm. If the offspring feels some sort of anguish over this, that's a self-inflicted harm.
Having said all that, I would really prefer that couples with severe fertility issues would instead adopt. Arguably the planet is already overpopulated, and there are plenty of unwanted kids who need parents. But I'm also one of those people who doesn't understand how people feel the need that they must reproduce, so clearly I'm missing something that the mainstream believes.
Fertility treatments can be paid by health insurance and there is no 'parent vetting' process to delay things. Often fertility issues are one sided, so at least the children will be half of the couple.
That's your definition. It's not everyone's.
> If the offspring feels some sort of anguish over this, that's a self-inflicted harm.
So you're saying the feeling of anguish is self-inflicted? A rape victim who feels anguish is self-inflicting harm?
Clearly not.
Maybe not everyone's, but it's a pretty well-accepted definition that a majority of people would likely agree with. That's often the best we can do.
> So you're saying the feeling of anguish is self-inflicted?
Not in general, but in this particular case, yes, it would be.
> A rape victim who feels anguish is self-inflicting harm?
Ah, the good old false equivalency. Please don't present arguments in bad faith.
Source, please, since that's not what it says at https://www.ohchr.org/en/professionalinterest/pages/crc.aspx
A parent can simply be a "caregiver of the offspring in their own species"[1]
However, you've made an assumption that is, at least partially, incorrect.
I would not mind meeting potential offspring, for a short contact later in life personally, but I'd want no part in upbringing or any other negative legal implications- like claims to my estate, which should go to the people I've laid out in my will. This is why, for example, many people who do donate choose to do so anonymously.
We (being my wife and I) just don't think we'd make good parents because we don't like children, and children should be raised in loving households by parents who want them, and who are willing to dedicate a portion of their lives to raising children. Adoption is also an option, but also, quite often, very difficult. So I don't judge people who go with sperm or egg donation instead.
I see nothing morally wrong with helping a couple that are struggling with infertility to bring a child into the world, with the hope that it would be a kind and loving home. (And one would assume that a couple that has to go to the lengths of tissue donation for fertility, would do so)
However we're also both privacy conscious, and care about the privacy of our extended family members. A child raised in another environment may not be, and as stated in the article (and as we've seen in other recent articles about FamilyTreeDNA etc.) This would compromise the privacy of our entire family. Hell, the child's (non/semi bio) parents could do this at birth.
Some kind of restriction on testing on this case seems to me like an reasonable middle ground.
Sorry for lack of citations re: other articles, am on mobile, however articles about the topic are easy to find with a web search.
You claim restriction on testing seems reasonable - restrictions for whom?
For the offspring? As another person pointed out, they have no agency in this. They did not sign a contract promising anonymity. They should have every right to seek out their genetic origins.
For your 3rd cousins who you've never met? If even one of your distant relatives has tested on one of these sites, it's incredibly easy for an offspring to track you down and figure out who you are.
How would you suggest restricting or preventing that? Whose usage would you restrict?
I didn't say people - I was only speaking for myself. I wouldn't want a contest to my will (which would cause hardship to my loved ones) from the result of an act of goodwill and charity. In the jurisdiction I'm at at least (Canada), it is illegal to receive compensation (with the exception of travel expenses) for sperm donation, so it really is an act of charity. Additionally, legislation regarding parental rights differs from province to province, so while people in, say, Ontario have protection against claims to their estate, if donations were made via clinics and sperm banks, this might not be the case in all provinces in Canada (I am in another province). The crown (or people) can and will contest wills that it deems unfair or unreasonable, and there is plenty of case law on this topic. as I mentioned, depending on the province, you could potentially end up with a pile of people with a potential claim to part of your estate, if the province defines children as genetic offspring and doesn't make the distinction between donation and not. I am not a lawyer, but as a potential donor, risk mitigation is something an anonymous donation helps with. A contest to the will, even if unsuccessful, would delay my loved ones getting their inheritance.
> For your 3rd cousins who you've never met? If even one of your distant relatives has tested on one of these sites, it's incredibly easy for an offspring to track you down and figure out who you are.
As for my 3rd cousins, and even more distant relatives (some of whom I'm in closer contact with than my 1st cousins) the assumption I never met them is ridiculous. You don't know my familial situation, and considering my family went through the holocaust, where my family who didn't escape in time were slaughtered based on the fact that they were of the Jewish people, makes all of us wary of submitting samples to a database of genetic information held by third parties. And those of us who are left are all very close. This is especially scary with the current state of politics around the world.
> For the offspring? As another person pointed out, they have no agency in this. They did not sign a contract promising anonymity. They should have every right to seek out their genetic origins. > You claim restriction on testing seems reasonable - restrictions for whom? >How would you suggest restricting or preventing that? Whose usage would you restrict?
As for restrictions on the offspring and lack of agency in signing contracts, as far as I know, no-one in the world has agency over their own conception and birth, no matter where the source genetic material comes from. No one asks to be born. if we look at an anti-natalist perspective, you could go to the extreme and say that because we have to work to survive (unless you are born to an extremely wealthy family) that all childbirth is forcing slavery onto people. That is absurd, of course.
As people have pointed out elsewhere in the comment thread below, people have a right to know their parents, but not necessarily their genetic origins (and that is a separate distinction in the laws of many, but not all jurisdictions). Parents make decisions all the time before you have agency, medical and otherwise. Your parents decide on how to raise you, what to feed you, where you will go to school and what you will do until you have agency. These decisions they make for you carry over and affect your life, and there's very little you can do to change that.
So with regards to restrictions, I think that a reasonable solution would be along the lines of requiring companies like FamilyTreeDNA or 23andMe check with a database run by clinics if a person is a result of a donation, and if that donor consented to genetic testing, before any tests are processed. I also think we need limits on how, and to whom, companies like that can disclose information to. This shouldn't be impossible to implement, as sibling registries exist, even for anonymous donations in Canada. Additionally (and this isn't necessarily part a donor issue) there should be prohibitions on governments, corporations (i.e. advertising, pharma, and insurance companies), and law enforcement[1] having access to these databases. If you do opt in to having your genetic information used for research, you should, at the very least, have informed consent and receive compensation. This brings to mind the case of Henrietta Lacks, as well.
This never is a simple topic - for example, there are known cases of doctors using their own sperm instead of donor sperm, or the father's sperm [2]. This is horrible. There should be limits on how many children can be fathered by a single donor, and the geographic proximity of said donations as well. But ruling out protections for donors, who (depending where you are) may not be compensated for any kind of future risk, and are (if not compensated) doing a kind, charitable act to help couples who are struggling with infertility, is absurd. The realities of sperm donation, at least in Canada, aren't simple. You must be in good health. You must undergo blood screening. You take your own time and money to do this, and get at best, travel expenses back (and those are usually limited to $C70). On top of all of that, you cannot have sex or ejaculate for a couple of days between donations, and it's a 3-6 month process before you even start donating, and you are expected to be in the program for at least a year and maintain a healthy lifestyle.[3][4] You also have to disclose your medical records. People still donate, however, to help couples or families struggling with infertility.
Clearly, this is a very emotional subject (on both sides), and I do empathize with your situation, but I suggest you try and also look at other perspectives too - are adopted children less worthy than children born and raised by biological parents? Are children born from sperm or egg donation less worthy? Are your parents, who raised you, took care of you, and hopefully, loved you, somehow not your parents because they don't completely share part or all of your DNA? Can you try and empathize with how they feel as well?
I sincerely hope you were raised in a loving household, and that your parents (the ones who took care of you as a child) were good ones. It seems to me that you have a lot of anger and frustration, and that makes me pretty sad, to be honest. While I don't know you personally, but as I said before, if I were to ever donate, it would be with the hope that it would help a couple, struggling with fertility issues, to create a loving home and family.
[1] https://www.nytimes.com/2019/02/04/business/family-tree-dna-... [2] https://www.bbc.com/news/world-europe-47907847 [3] https://globalnews.ca/news/3454884/canadian-sperm-donors-don... [4] https://www.repromed.ca/donor_faq
tl;dr based on all of their collective experience - please, please, please do not donate sperm if you are not open to contact with the offspring.
> risk mitigation is something an anonymous donation helps with.
No. It doesn't. The law is incredibly clear on this. Sperm donation (anonymous or open ID) is treated the same and no one has a claim to your assets. I would consider this argument if you could find me one such case where a donor conceived individual (conceived through a formal fertility clinic) makes a claim on the estate of their donor - no such example exists.
> These decisions they make for you carry over and affect your life, and there's very little you can do to change that.
But why allow for the intentional deprivation of the knowledge of their genetic origins? You're suggesting we just accept negative, harmful circumstances without attempting to make positive changes?
> are adopted children less worthy than children born and raised by biological parents?
As you may be aware, closed/previously anonymous adoption records have been unsealed in many jurisdictions across the world. Society/the law has determined that intentional secrecy around genetic origins is a bad thing for human beings. I see similar things happening with donor conception (the records were opened in Australia, for instance).
> You also have to disclose your medical records.
You'd be surprised at how lax many clinics are on this issue. It is first and foremost a for-profit business. Many documented cases of severe mental health issues with donors - and even more with parents being outright lied to about the specifics in a donor's profile.
> So with regards to restrictions, I think that a reasonable solution would be along the lines of requiring companies like FamilyTreeDNA or 23andMe check with a database run by clinics if a person is a result of a donation
No such database exists. We have been advocating for such a database for 20+ years here in Canada. 90% of offspring of heterosexual social parents that are donor conceived do not know they are donor conceived. Are you proposing that someone would submit their DNA to 23andme, but not be able to receive their results back if they were donor conceived? What if they didn't know they were donor conceived, and found out as a result of your policy? Does that sound like a good idea?
> As for my 3rd cousins, and even more distant relatives (some of whom I'm in closer contact with than my 1st cousins) the assumption I never met them is ridiculous.
I think you misunderstood my point here.
Do you know all of your third cousins? I think most people do not know all of their 3rd cousins. If you're the rare exception to that, my apologies.
My point is that a hypothetical offspring can easily identify you if there is anyone within 3 generations removed from you that has happened to be on one of these sites.
Rather than prevent offspring (who, again, have no agency here) from using these sites, why not prevent any relative within 3 generations of sperm donors from using 23andme? How about a database of donors, and anyone within 3 generations is not able to have their information listed on 23andme?
Given that donors have agency in this (they are choosing to donate sperm) and offspring do not, that would seem to be a fairer way to accomplish your objectives for privacy.
To address your comments:
That's why I explicitly uses the word 'contest'. As I mentioned, the fact that this might delay in any way the execution of my will upon my death could cause hardship to my loved ones. This has to do with the way I earn money (as a consultant). My wife who owns a minority stake in our consulting business would need to take over and execute business decisions immediately.
I'm not saying we can't make changes for the better. I'm saying that you don't have control over the circumstances of your birth, or your young life. This however is not a good reason to deprive a charitable donor (in the case of Canada) of their privacy.
Regarding adoption records, anonymity laws were originally put in place to protect young children from being abandoned on doorsteps and to stop infanticide.
As for lax standards, I can't comment on for profit clinics in the US, and I am not sure how much money is made on the clinic's part in Canada, but from what I've looked into as a potential donor in Canada, the standards were very rigorous, and it would be unpaid to the donor at least, as per law and health Canada guidelines.
> No such database exists. We have been advocating for such a database for 20+ years here in Canada. 90% of offspring of heterosexual social parents that are donor conceived do not know they are donor conceived. Are you proposing that someone would submit their DNA to 23andme, but not be able to receive their results back if they were donor conceived? What if they didn't know they were donor conceived, and found out as a result of your policy? Does that sound like a good idea?
I think that would be a reasonable outcome, at least, to protect an anonymous donor's privacy, but I'd also expect parents who used donations to have a conversation about the matter before having a child send off a kit to one of those companies. I think then reaching out to the donor, via the escrow of the fertility clinic, to see if contact would be welcome, would be fair to all parties involved. ReproMed also has a Sibling Registry - which I do have qualms with, namely the cost to register. Something like this should be publicly funded, IMHO, as part of the healthcare system. I think this is a situation that sucks for everyone, to be fair. More on this topic below.
>Do you know all of your third cousins? I think most people do not know all of their 3rd cousins. If you're the rare exception to that, my apologies. >My point is that a hypothetical offspring can easily identify you if there is anyone within 3 generations removed from you that has happened to be on one of these sites. >Rather than prevent offspring (who, again, have no agency here) from using these sites, why not prevent any relative within 3 generations of sperm donors from using 23andme? How about a database of donors, and anyone within 3 generations is not able to have their information listed on 23andme? >Given that donors have agency in this (they are choosing to donate sperm) and offspring do not, that would seem to be a fairer way to accomplish your objectives for privacy.
I do, the ones who are alive at least. Hoping to spend Rosh Hashana with my gran's cousin's family, which includes her grandson, who is indeed my third cousin :). While I'd be ok with this scenario, at that point you have exposed the donors, and you've taken potential agency away from multiple people, rather than the singular potential offspring(s). It's pretty much a loose-loose situation either way.
Either way personally I'd be happier if these sites didn't exist at all, but that's besides the point :).
It's clear you've done a lot of secondary research. I am, too, very familiar with the situation in Canada and have done a lot of advocacy work here. I would suggest that the standards are not quite as rigorous or well defined as you might have been led to believe (I've spent time at several panels put on by Health Canada and engaged with many "experts" that have led me to that conclusion).
If you're seriously considering donating, I'd encourage you to engage with more human beings and do some primary research - recipient parents, offspring, and other donors - rather than just relying on your (certainly useful, but empathetic-aly limited) secondary research.
This is one of the more active communities of said types of people:
I however do not use FB (or any of their other products, whatsapp, insta, etc) for privacy reasons. Are there any other forums etc you could recommend?
Or should that just be "in the fine print" when you donate?
I don't think there are any examples of someone donating reproductive material through proper channels later being on the hook for child support.
The point is proper donors should have no parental responsibilities! It should be impossible to dodge actual relationship support with it or misconduct. Dirty fertility doctors who use their own sperm for all patients? Yeah hit them with 47 counts of child support.
Similarly it would be reasonable to have requirements for eligibility in exchange for the "severance" to ensure the child(ren) will be no more likely to require state support than a similiar couple reproducing directly - changes in circumstances can happen to anyone of course.
The issue here is that I fundamentally do not believe it is at all ethical to do this.
Are there already such laws?
There are documented cases of genetic half-siblings having a sexual relationship because they did not know they were donor conceived.
There are documented cases of suicides from adults finding out they were conceived from anonymous sperm donation and that "their Dad was not their Dad."
90% of donor conceived adults do not know they are donor conceived - and so all have provided incorrect medical history information to their doctors. Does that not seem like a risk?
A much higher % of people conceived with an open ID donor are told of their origins.
Why would anyone donate if it means taking on indeterminate risk?
What kind of "indeterminate risk" are you referring to? The risk that a biological son or daughter gets in touch? If a donor is not open to that, they should not be donating.
I will be waiting until I can analyze my DNA myself, without handing it over to a company that is going to do whatever it wants to with it. We are not yet able to fully appreciate how valuable DNA is, and yet everyone seems delighted to pay companies to take it from them.
Perhaps they will be less delighted when they are convicted of a crime based off of a false positive, have their DNA shared with Facebook to Improve Their User Experience ™, or have their DNA made public after yet another security breach where it is left on an unsecured server.
Remember that your DNA is very valuable, literally. Those who have noticed recent progress in genomics should realize how valuable it would be to a competent advertising company, allowing them to profile and predict users with significantly higher personal accuracy, even if all they are doing is performing basic GWASs (https://en.wikipedia.org/wiki/Genome-wide_association_study).
For that reason, my company seeks to apply cryptography to DNA molecules. This helps avoid insider threats and hardware backdoors. We hope that our tech will be used by multiple service providers to allow you to have complete control over your genetic data security. More info at geneinfosec.com
Trust who? This bullet makes no sense to me. The entire list seems to boil down to "big company bad, wear tinfoil hat." There are certainly valid reasons one would not want to have their DNA sequenced by a public for-profit company, but this list is reaching.
> A pair of socks is a better gift.
I mean, really?
>Scientists have discovered how to store data and even animated GIFs in DNA, and even believe malware could be placed in DNA to compromise the security of computers holding databases. Still trust them?
This is nonsense of the highest order. People can print the binary of malware on a reams of laser printed paper. Do I still trust paper? The generalisation of the arguments made in this article is egregiously fallacious.
The notion of gifting socks just seems to bring in Christmas-like warmth and appeal to the readers past experiences (who hasn't been gifted cloths...). All in all, you are right, the sock gifting doesn't fit, even if it is an admittedly better idea.
Essentially, the companies aren't doing QA on their genes and they should.
> Don't reveal your DNA, because socks are a better gift.
The two are completely unrelated, IMO.
Socks are seen by most as a terrible gift. Hence [terrible gift] makes a better gift than a DNA test.
Too late for me. I have 7 siblings and 4 half siblings. I have 10 aunts and uncles who are blood relations (I'm not including their spouses) and about 70 first cousins. Plus my parents and grand parents. To the best of my knowledge, almost all of them have had their DNA work done by ancestry and 23andme. The family has a lot of doctors (some of whom are boarded in genetic medicine) that think everyone (not just in the family, but literally everyone) should get their DNA tested to help answer questions about family history, migrations, diseases, etc. I'm considered odd because I don't want to get mine done, though it's probably pointless since so many people that share my DNA have already done it.
If any 2nd or even 3rd degree relative has their DNA information banked with any of these services then you are effectively identifiable. Police or anybody who can get a sample of your DNA left behind anywhere will be able to immediately identify your family, then rapidly rule out most of the other family members through orthogonal information and in most cases you will be the only candidate remaining.
So the real question is, if you already lost your anonymity, is there anything left to lose by buying in? You might as well get the benefits if you are having your privacy destroyed anyway.
One can counter with "what if you're a journalist who published leaks of damaging government information and you're trying to protect a source" or various other scenarios where keeping your identity anonymous is legitimate and legal.
What 23&me offers is kinda useless IMO. We are too much of mutts to accurately trace your history with high confidence. Why do I care if I'm 14% swedish and 8% turkish and 3% kazakh? SNPs are mostly annotated by correlation, and rarely are causative to disease, so even if you had that 'bad' allele it means nothing devoid of any context or more downstream analysis. It's a $200 curiosity more than anything.
My only worry is insurance companies being deliberately obtuse about the data and jacking up premiums or denying coverage (if the Rs get their way). 'You have this allele that's in 5% of leukemia patients vs. in 3% of the healthy population, we will bill accordingly.' Doesn't mean you will ever get leukemia, but it's another potential excuse to gouge the consumer.
If you are concerned about you leaving DNA around or somehow big bad government spying on your boring life, I'm assuming you've never sneezed, and have already burned off your fingerprints?
This is really hyperbolic. Who is behind the institution publishing this and what are their motives?
Edit: Oh... Mozilla????
I guess my point is that shit is happening fast, already unimaginable stuff is happening (DNA + malware in petri dish WTF would that have even meant 2 decades ago?) So if there are two miracle steps needed to make something insane happen and one has already occurred then shouldn't we be ready for some insanity?
I ended up downloading my data and canceling my Ancestry service since I wasn't comfortable with how that data could potentially be used in the future (one term of services change from sketchy stuff happening).
Question to people here, what can I do with this data I've downloaded? Data was surprisingly small, just 5MB - with 5 rows: rsid, chromosome, position, allele 1, allele 2. Is there any OSS software I can run on my machine to learn something useful about myself?
Agree to the EuroBS cookie thing then Download the tsv file and load into a spreadsheet.
Then search for your "rs*" ids. (rsid is the canonical SNP, single nucleotide polymorphism, identification number ) Example "rs id" looks like rs2179129. Duckduck the rs id if you want more info.
If you know a programming language, you can automate processing of the file you got from dna info provider and the the gwas catalog file from NHGRI.
If you want to say that the person who spat out the piece of gum you sequenced is female and European, yeah you can probably do that for $200.
My understanding is that what 23andme et al do is very far from actual full sequencing.
This is the whole thing, raw data included. Not 23andme crap.
Edit: Dante seems to be doing the basic 30x full sequence for $229 at the moment.
I have some variant of Marfan's syndrome but have not shown the associated heart problems. After consultation with a geneticist we concluded that I could spend a bunch of money to get the exact variant that I have of the relevant genes sequenced. But almost certainly I would learn that I have some variant of Marfan's syndrome that is not understood. Relatives who also have the same phenotype can get sequenced to verify that it is genetic. But since none of us are showing the most troublesome problems, and the literature almost certainly doesn't have our exact variation, I would learn nothing more than I know already.
So just get an MRI every 5 years, and wait for costs to come down and research to improve. In 10-15 years look again and maybe the genetic test will be useful then.
For a genetic condition as specific as mine, the sequencing done by these commercial providers is useless.
There are a few very well done genetic tests for a limited number of diseases.
and don't throw away/flush any biological material. in most jurisdictions, trash is public property. if someone really wants your DNA they can hunt through your garbage till they find a hair, flesh, blood, etc.
And the fact that you share so much of it with your family just compounds the problem with trying to keep DNA a secret.
I'd like my DNA to remain private but it's less realistic than keeping even your fingerprints private.
PCR in a phone? How novel.
This sort of nonsense belongs over at /r/futurology.
Same thing with facial recognition. I still hate fingerprinting.
None of these biometrics are perfect, and my core objection to all is that they make every one a suspect. Suddenly, it's possible that any person in the nation could be "matched" and, simply by the say-so of the all-powerful computer, determined guilty.
My math professor used to make fun of students for relying too much on calculators. He would tell a story of a student who received an answer of several million miles from his calculator on a problem concerning distance between two cities in America. Because it came from his calculator, he took it as gospel, even though it was obviously wrong. There is no reason to expect better of our law enforcement or of our governments. See the cases of incorrect DNA testing getting people locked away for years.
I hope there is some way to eradicate biometric technology. I do not see a huge benefit, as it can be forged. And if the information is ever leaked, it cannot be changed. Fingerprint got uploaded to the internet? Nothing to be done.
Is any American politician actually advocating to stop this, possibly outside of the Libertarian Party (which I generally like, but will sadly never be elected, especially if they keep putting up Gary Johnson)? This might just be enough to convince me to support a candidate of one of the main parties.
We were supposed to live in a nation where law enforcement didn't watch us unless we were a suspect in a crime. This stuff makes everyone a suspect. The idea of "transparency" only works if we have some way to verify it (which we don't) and if we can punish politicians or bureaucrats for abuses. We can barely fire bureaucrats as-is, how will we do it in the future? And politicians never get punished for mishandling a few cases.
And no candidate from the duopoly will take it up as an issue, because it doesn't get them more votes, and may actually lose some out of police employee unions.
So you're not going to tackle this with voting. Hire a lobbyist yourself, or donate to a PAC or advocacy org that is dedicated to privacy issues.
Too broke. Also, not a lot of advocacy organizations focus solely on privacy issues; most feel the need to mix in others.
And if a close family member is in that data base, you would be identified immediately.
You were explicitly asked for permission (in clear, non-caged language) when you accessed your data. If you declined, your data isn’t being resold. Other reuse is restricted to the extent that you’re answering voluntary 23andme questionnaires, and used in a non personally identifiable way (i.e. in summary statistics).
I still wouldn't get one of these tests, mostly due to accuracy issues and because I really just don't care, but I feel like some of this article is fear mongering.
Similar issue for giving your full legal name to a stranger, which will be hard to protect has facial recognition gets better.
Not uploading your entire life including photos tagged with your real name to social media helps quite significantly with this.
Hitler drank water. Stay away from it.
Also, from the original quoted guardian article: "like many things in life, direct-to-consumer genetic testing is tailored for white people".
> 10. A pair of socks is a better gift.
The smartest question I can ask about this: what the fuck is this shit?
Some of them are pretty serious consequences of using their services: some of them involving the company's practices, and others involving the dangers of developing this industry. Both should be considered in separate to get a clearer picture of the issue. This article is treating it as BuzzFeed treats a new game of thrones episode, therefore depriving it of any legitimacy.
I'd like to see more elaborated on three points particularly: the privacy implications of having your DNA shared, the accuracy and precision of the purported results and the possible dangers of applications of this industry.
You don't keep your shoes in 2 different piles for lefts and rights; you pair them together.
My toddler actually came up with that very process. Box of left shoes and box of right shoes. It works pretty well for her.
One downside would be if you have a few very similar pairs of shoes, that would undoubtedly make finding the matching shoe much more difficult because you couldn’t immediately home in on it.
I don’t think I’ll try it, but certainly something new to ponder.
If you have 2 strong points and 12 weak ones, you're generally much better off making a 2 point argument than a 14 point one.
If I'm not superficial, either both the same (if those 20 are totally useless), or the one with the better arguments. Those "20 tangentially related, low-quality, possibly irrelevant points" could still have some point worth considering.
I find it annoying.
What is the benefit of commercial DNA testing? Some dubious genealogy that might be mildly entertaining? If there's an actual health benefit to DNA screening, it should be done by a health professional where the information could be subject to HIPAA.
What we need to do is stop companies from claiming they own your dna because you sent in a sample.
There is an entire field called Pharmacogenomics for it: https://en.wikipedia.org/wiki/Pharmacogenomics#Cytochrome_P4...
Some slopes are indeed slippery.
> You could become emotionally scarred. You may discover things you weren’t prepared to find out.
1. The results may not be accurate
2. Heritage tests are less precise if you don’t have European roots.
3. Your DNA says nothing about your culture.
That's not true at all. There have been dozens of publications using that data and they have been instrumental in progressing our knowledge of genetic associations.
I have personally used 23andMe's array based data and resulting associations to investigate disease. It is priceless and hugely beneficial.
Also, whether the type of information obtained from a 23andMe style test has any material impact on health is very much unproven, as outlined in their own terms of service, and the fact they were poleaxed by the FDA for overselling the utility of the test.
UGT1A1 UGT1A10
You can take that information research more or change your lifestyle / diet to put less stress in processes that involve those genes.
Very useful or useless depending on who you are.
Gilbert's syndrome is pretty common. The vast majority of people that have it are not bothered at all. There is also no proof that lifestyle interventions are in any way helpful. This is the case for basically everything that 23andMe tests for.
If you want to raise a proper counterexample, you would choose the BRCA1 gene. But again 23andMe's test doesn't tell you whether or not you have a BRCA1 mutation, it only tells you if have one of the SNPs they test for. If you don't get a positive result, and that is the vast majority of people, you aren't any better off. That's why in the clinic when someone needs a BRCA1 test, we sequence the whole gene using next generation sequencing technologies.
There are a lot of studies that show lifestyle influencing Gilbert Syndrome sufferers. The most common suggestion is to avoid drinking.
Not sure it's as completely useless as you believe.
You are splitting hairs to be bitter.
I will ignore your ridiculous assertion that I am bitter about a consumer genetic test.
BRCA1 BRCA2 Alpha-1 Antitrypsin Deficiency G6PD Deficiency Hereditary Amyloidosis (TTR-Related) Hereditary Hemochromatosis (HFE‑Related) Hereditary Thrombophilia Late-Onset Alzheimer's Disease
They are also able to report carrier status for 40 other diseases which I am too lazy to copy and paste here.
Lastly they have dozens of risk alleles reported for parkinsons, CVD, high blood pressure, high cholesterol and many other diseases.
Being positive for any one of these tests would be a constitute a significant, life-altering diagnosis. Know the carrier status could also impact and help avoid bad outcomes in your children. All of these are provided by the basic SNP array and have real and immediate value and which you can use to help mitigate the development of future disease.
You describe 3 types of tests:
1. Highly penetrant but rare disorders with severe clinical phenotypes. - it’s difficult to argue that this is important. There is a long list of such disorders that are extremely rare. If you think it is so drastically beneficial to test for some, why not test for all of them? What is so special about the disease SNPs 23 do test for? Additionally, 23’s test doesn’t actually cover all pathogenic mutations - BRCA is the perfect example of this. They don’t even test the most common BRCA SNPs in the general population. If you have a franeshift indel you are out of luck. So you are testing imperfectly for in some cases extremely rare conditions.
2. Highly penetrant but common disorders without severe phenotypes - G6PD etc. Well this is maybe justifiable for G6PD. Certain drugs are contraindicated in someone with G6PD such as chloroquine or rasbiuricase, and doctors test for G6PD deficiency in that setting. Otherwise I guess you should avoid fava beans. Hardly life changing, especially as the link between a SNP and actual enzyme function is not direct.
3. Polygenic conditions where genetic factors play a small role - it has been said many times but knowing your relative risk is increased for condition X has very little impact. Inevitably it leads to lifestyle modifications you should make anyway. I don’t need to know my CVD risk is higher because of some SNP, because I live in a western country and my risk is already high. Furthermore, it is totally unproven that some kind of intervention, lifestyle or otherwise could reduce your risk of a neurodegenerative condition if you have certain SNPs. Who knows, drinking green tea and not eating carbs or whatever you decide to try could be harmful.
Regarding pre-natal screening, there are dedicated tests in that setting, and if you are serious you would definitely choose those for their comprehensive coverage and counselling services.
So yes, by all means test your SNPs if you want to, but touting ‘priceless/drastic’ health benefits is in my estimation severely overselling the matter. 23andMe seem to agree, because they don’t advertise any of these amazing benefits on their website. It’s all about ancestry tracing.