"8. Anonymous sperm and egg donors could become a thing of the past."
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.
On the flip side of the coin, I was recently considering donating sperm anonymously and now I won't, unless there's some kind of legal protection against this. I (and my wife) do not want to have our own children, but would be happy to help a random couple conceive, if this is something that would bring them joy. I wouldn't want my (and my family's) privacy and anonymity compromised however.
I think this is a very positive outcome for all involved.
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.
> 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.
That's my point - providing the biological material and nothing more is inherently unethical.
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).
> providing the biological material and nothing more is inherently unethical.
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.
Interesting discussion, even though some responses are emotionally charged, understandably :-)
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.
Article 7 of the United Nations Convention on the Rights of a Child asserts that everyone has a right to know their genetic origin.
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.
> Article 7 of the United Nations Convention on the Rights of a Child asserts that everyone has a right to know their genetic origin.
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.
Adoption is a lot of work, money, time and vetting, especially if you don't want a child with physical issues, to look like the parents or to go international.
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.
I'm not in such a position, but if I wanted to learn about my ancestry and the source of my conception was reduced to someone else's anonymous transaction I think I'd be quite upset.
Scientific studies show that creating a child with your genetic material while systematically denying them any chance to meet you results in poorer outcomes. Children from anonymous donation are at higher risk for drugs, depression, crime, etc.
The only thing that is going to accomplish is severely restricting the number of people who are willing to donate sperm - likely to an extent that couples who are unable to conceive will not have any options available to them
I see this has sparked a decent amount of discussion, and that's always good.
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.
Claiming that people donate anonymously because they are concerned about claims to their estate is, IMO, pretty ridiculous. There have been millions of sperm donations done through fertility clinics and not one documented case of any offspring laying claim to an estate.
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?
> Claiming that people donate anonymously because they are concerned about claims to their estate is, IMO, pretty ridiculous. There have been millions of sperm donations done through fertility clinics and not one documented case of any offspring laying claim to an estate.
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.
It's less anger and frustration about my own situation, and more about the lived experiences of hundreds of people I've engaged with and learned from over the years.
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.
Well, I'm glad to hear that at least your personal situation is good. and I am glad that this has led to a good discussion. It's pretty heartbreaking to hear that a lot of people are unhappy about their similar situations.
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:
It certainly has been an interesting discussion :) and I in no way claim to be an expert, just a person who has been and is seriously considering this. From what research I've done and from the people I talked to, it seemed pretty rigorous, but that could be the marketing spiel.
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?
Also, I did ask for feedback on your suggestion from the community - would be happy to share that with you (even an anonymous email address or something). Hearing from actual adults that could be similar to your hypothetical sperm-progeny might be interesting for you. I'm at rob@higherme.com if you want to get in contact anonymously.
I read stories about adults trying to find their biological parents all the time and think why do they want to do such a thing? What are they hoping to gain -- by becoming close with their biological parents who possibly have knowingly abandoned them, they also risk alienating and hurting their adoptive parents. Sounds pretty selfish to me.
There was a case of that happening with a lesbian couple who split up, but the donor and couple in that case didn't go through the proper channels. They basically went the turkey baster route rather than finding a donor through a sperm bank.
I don't think there are any examples of someone donating reproductive material through proper channels later being on the hook for child support.
No, absolutely not - there have been hundreds of thousands of people conceived this way and not one documented case of child support when an actual fertility clinic has been used to conceive.
Laws with far more precedence than this have been changed by courts. Such a change should come with a significant amount of forewarning, but given the situation there isn't much one can do even with sufficient forewarning.
Really the way to fix that isn't enforced ignorance but proper and ironclad severence that says - no donors have no parental rights or responsibilities unless they agree to adopt/marry in later. No matter how convenient it would be to bill the donor instead.
AH yes... the 'punish the poor men' argument. In reality, such laws will lead to powerful men able to abscond their paternal responsibilities by having a good lawyer, while poor men remain indebted to their offspring (as they should be of course).
It isn't about the men or the women. The whole point of an actual sperm or ova donation arrangement is to separate the genetics from the social in having children. Sex and rich or poor it shouldn't matter - the arrangement is specifically to aid fertility - allowing the custodial parents full rights and thus the responsibilities while giving minor compensation to the genetic donor who agrees because the cost is minor to them and they can live an undisrupted life. Without honoring the fundamentals the system breaks down.
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.
Yes they should, and others too (see my GP response above). Anonymity, such as it was, helped prevent risk. Now we need a law to limit the liability of a donor.
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?
Now how to apply such a law that wouldn't also apply to people who reproduced in the standard fashion but don't want to disclose whom they did so with?
They're more related than it might immediately appear - purposefully choosing an anonymous donor over an open ID donor is often correlated with shame and secrecy around infertility, whereas choosing an open ID donor signifies acceptance, empathy, and a lack of shame/secrecy.
A much higher % of people conceived with an open ID donor are told of their origins.
It isn't a concern for adoption, so I don't know why it would be a concern here. Courts care about the legal parents of a child, not the genetic parents.
The word "donate" inherently implies an element of altruism.
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.
While this list isn't the best and some reasons are a bit silly, I'm happy to see more content that helps inform regular users about the downsides of these practices. Paying to give a company your DNA is absurd. As I stated on this two weeks ago:
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).
This is analogous to the 1800s when people disagreed over whether one should let a camera take your photo. It’s an interesting debate. However, if sequencing prices and mobility (see oxford nanopore) continue to advance at current rates, in 30 years your DNA could be sequenced thousands+ of times a day, everywhere you go in public, akin to how you are photographed now with security cameras, in the background of selfies, et cetera. In that sense because of abundance there’s 0 value in our DNA. From an engineering standpoint it’s going to happen and there’s nothing you can do about it.
Genetic information is probably the most valuable information about you. Your fears are well founded, but the threat matrix is growing and the sci-fi-like threats around genetic data that we will face in 10, 20, 30 years can only be imagined.
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
> Genes can be hacked. 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?
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.
I really agree with you. Specifically, "20. Genes can be hacked." reads ridiculously to me.
>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.
I believe that the bullet point is meant to illustrate that silly things can be easily put into your genetics, therefore it is also easy to put in malicious things. The BRCA1 gene being an example of a malicious set of genetic code [0]. In addition to harm to the person whose genes may be edited in the future, you can then modify the genes sent into the companies so that they can hack the companies. I'd imagine that pulling a 'Jimmy DROP TABLE Reads);' [1] is not something that the machines are QA'd against. Also, if you were to use the databases of these companies as a 'storage' for future comparisons, nothing is stopping anyone from putting strange stuff into your digital representation of the code.
Essentially, the companies aren't doing QA on their genes and they should.
Several commenters are attaching to this sock bit. Story time, my mother gave my minor daughter a DNA test kit as a present. I was horrified and my mother was bewildered by my very visceral and unfiltered "aw hell naw". Socks would have been a better gift. In fact my daughter also got some socks and they are super cute, she enjoys them frequently. Socks!
Yes, a pair of socks is a better gift than a family member jeopardizing my anonymity. I got a great set from WeaveWorks at last years Kubecon in Seattle!
>You will jeopardize the anonymity of family members
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.
This is unfortunately the same boat everyone is in.
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.
Is it not a good thing to catch a criminal in your family? I've yet to see a compelling argument that explains all the tinfoil. Replace DNA with fingerprint and it's the same piece.
That's sort of an extension of the "if you've nothing to hide then you've nothing to fear" type argument.
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.
It's useful clinically, and it would be ignorant to deny it in that setting where it's secured by HIPAA. If someone in your family develops a cancer and you already have everyone sequenced, that makes it a lot easier to inform on therapy options. Having this data is also useful for future researchers on the disease (the best discoveries are made in museum drawers, not the fossil find on the hillside; you never know what you might stumble upon with a new tech or even just fresh eyes so it's important to have the data collected).
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 similar to people who avoid Gmail for privacy reasons. Even if you don't use Gmail, your correspondents do, so Gmail has a sizable chunk of your personal data to analyze and monetize.
You have 70 (seventy) first cousins from only 10 aunts and uncles? That seems unusual because I have 15 blood aunts and uncles yet slightly less than 30 first cousins.
Well, 20 aunts and uncles (I was only including the ones I share DNA with). But yeah, most had 7+ children. My paternal grandmother, who is still living, has 100+ great-grandchildren and counting (the most recent great-grandchild was born just 2 weeks ago and quite a few other grandchildren are expecting). The leading edge of the great-grandchildren are just now reaching their early 20s and one of them has a great-great-grandchild on the way.
> Genes can be hacked. 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 really hyperbolic. Who is behind the institution publishing this and what are their motives?
I wouldn't say hyperbolic as much as irrelevant. What does the ability to hack DNA have to do with having my complete genome? So you'll have a Petri dish full of cells with my DNA + malware? Then what? (I realize 100% that I'm ignorant here and am genuinely interested in the answer).
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 used Ancestry in the past but didn't really get much info, basically I'm Mediterranean which I know I am since that's where I grew up and links to some random 6th degree cousins which TBH could be anyone given that I'm from a country with a total population of ~4M.
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.
Unfortunately, you would have to live in a plastic bubble to make that possible. You probably shed many petabases of your DNA every day. Your DNA is no more private than your face. The best you can do of you don't want to reveal it is to never leave the house. Also, don't have family, relatives, or members of the same species to reveal your secret...
This is unnecessarily paranoid. It would take a concerted effort to obtain a good quality and sufficiently pure DNA sample from a person's ambient DNA. In the mythical scenario that someone wanted to get your whole genome sequence without you realising, they would need to collect many ambient samples (the gum you just threw in the bin, swabs of handles and keypads that you just touched, hair samples) and perform whole genome sequencing, which would cost multiple thousands of dollars. 23andMe's crappy SNP test is useless on a sample that could be contaminated with other human DNA.
Full sequencing is under a thousand bucks now and has even been on sale once for $200. Another year or so and I bet you will be able to have it done for less than $100
you can get 30X at $800 from at least one provider but that's not saying much, I think most people would prefer higher depth for accurate variant calling.
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.
I agree. I know a lot of genomics and health and after having my whole genome done, the results were worthless- I knew more than the genetic counsellors and had to explain to them that just randomly googling for SNPs and grabbinbg keywords from the research papers was a terrible idea.
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.
Yeah trying to keep DNA private is a losing cause. You're constantly leaving your DNA laying around. How long until the average phone is capable of scanning for DNA on any random surface? I'd bet not as long as we'd like.
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.
The genie is out of the bottle; wait ten years and DNA will be mandatory to include in passports, drivers licenses, etc.
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.
There's no way to eradicate biometric tech, there's no way law enforcement will stop using biometrics, the only thing we can ask for it more transperency how the biometric data is used, processed and stored. No hidden fingerprinting, no unknown-quality proprietary software and hardware, extra-strict quality and integrity controls. The genie is out of the bottle and we can only hope not to wish for the genie not to maliciously comply with our wishes.
I don't buy any "transparency". Any time I hear that word, I jump to the idea that it is being used to mask something by releasing most things. I don't really care how it's used, processed, stored, etc.; I care that it is. The feds want a biometric database of every American that can be used to track, monitor, and regulate movement.
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.
The problem with third-parties in the US is that they all have platforms that include issues other than reform of voting methods in the US, such that the political duopoly is broken.
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.
I actually want to submit some other person's DNA to them, so it can be in the DB as mine. Would they notice this, assuming I find another <same race, same sex> person?
Genetic data can be used to identify you, so although this trick may provide some obfuscation, ultimately it would place your identifiable information in the data base.
And if a close family member is in that data base, you would be identified immediately.
I think you misunderstand. GP's idea was not to submit their own DNA under someone else's name, but rather to submit someone else's DNA under their own name (as a decoy).
I paid 23&me to test my DNA. I have received the results. Now I have no idea how that information is being re-used or sold. I plan to submit a delete request of my data when CA’s CCPA law goes into effect.
> Now I have no idea how that information is being re-used or sold.
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).
An unknown half-brother found me after an Ancestry.com DNA test. It's been a weird but very fulfilling experience for me. I realize it's not that way for everyone.
About a year ago I saw a link here on HN from an Intel(?) guy in which he listed ways that DNA info can be abused. I tried to find the talk but have been unable to. Does anyone remember the talk and has a link?
If pharmaceutical companies want access to my DNA then fine... they can pay me for that access. I will not give it away for free and certainly not let them charge me money for it.
I thought these companies didn't actually sequence your DNA. Smarter Every Day did a video where they showed how your DNA samples are checked for several know markers to see if they attach. Unless you specifically allow it, the samples are then destroyed.
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.
Oh, that's cute, thinking you have a choice. As DNA tests get cheaper and more powerful, a rando could get it just from hair or skin cells you leave behind.
Similar issue for giving your full legal name to a stranger, which will be hard to protect has facial recognition gets better.
>4. Racists are weaponizing the results. White nationalists have flocked to commercial DNA companies to vie for the highest race-purity points on extremist websites.
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?
The word "weaponized" made me roll my eyes. Some rascists with little influence outside their circle on a corner of the internet is hardly a weapon.
Now what the govt (using DNA for prosecution) or big business is doing with the DNA does seem dangerous.
The danger about making these lists is that you may end up thinking that you have to get a high number of reasons to make your claim seem valid. I would not be surprised if the author started stating five to ten reasons and then thought that 23 was a good number for the reference, therefore proceeding to fill up the article with whatever nonsense. That's the only process I can think of that nets you "they sell your DNA to other companies", "scientists can make gifs with your DNA" and "companies buy ads" to be arguments in the same hierarchical level.
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.
The quickest way to lose a good faith debate is to exaggerate your side. From that point on the debate shifts to be about your exaggerated claims, you're now on the defensive, can't put forward whatever legitimate points you might have, and even those points are now put into question due to your lack of trustworthiness. This article is guilty of that.
I’d never considered that but it’s an interesting concept. When you’re deciding what to wear you only have half the number of shoes to look at so have a smaller physical area to search and compare. Once you’ve chosen it’s fairly straightforward to find the matching one in the second container.
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.
FWIW, us adults haven't adopted her process. But it worked especially well for her as she optimized for her biggest issue at the time, which was figuring out which shoe goes on which foot. Now she can tell almost instantly but the 2 boxes remain. :)
Agreed that it is, but still not a valid reason to start throwing up junk items just to make a magic number. Undermines the validity of the entire piece.
If someone comes to you and makes a succinct 3-point argument and someone else comes to you and make those same 3 points plus 20 tangentially related, low-quality, possibly irrelevant points, who has been the more persuasive?
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 someone comes to you and makes a succinct 3-point argument and someone else comes to you and make those same 3 points plus 20 tangentially related, low-quality, possibly irrelevant points, who has been the more persuasive?
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.
Everyone has limited time and (presumably) attention. You don’t go around adding paragraphs of lorem ipsum or random bytes/words to your replies. Why not? Some of that could have some point worth considering.
you think it's a good strategy to arrive at a magic number of items? if you have 9 items, stop there, instead most articles on the web will bullshit one more and do a headline 10 x ...
The difference is antivaxxers are arguing against something that has a known and demonstrated benefit for reasons that offer nothing in return.
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.
Your opinion will be outdated in a few years. You drop dna wherever you go. When your phone is able to read it it will be used as part of your id. It is not private information the same way your face isn't private when you appear in public.
What we need to do is stop companies from claiming they own your dna because you sent in a sample.
I am personally in contact with hundreds of people who have made powerful familial connections and relationships with genetic relatives as a direct result of commercial DNA testing.
They do not mention the real reason why governments are scared to death by systematic DNA testing: it trivially reveals paternity fraud. In the current climate of rampant promiscuity and related deception, it could very well affect the amount of money men provide, while inflating the already ballooning welfare budget. It is clearly a gender issue.
23andMe and ancestry.com are accurately sequencing DNA and providing ancestry interpretations in line with peer-reviewed science.
2. Heritage tests are less precise if you don’t have European roots.
Human ancestry is extremely well-studied. These studies have included large numbers of genomes from many different ancestry groups. Certainly, the common ancestry groups among the likely readers of this article are well-represented and studied.
3. Your DNA says nothing about your culture.
From a statistical point of view, your DNA contains information about the ethnic groups to which your ancestors belonged. That in turn contains information about the culture in which your ancestors, and you, find themselves. If the author means "says nothing" in a sense other than "statistical information" then it would be interesting to learn what this sense is.
23andMe don't sequence DNA. They use extremely low resolution SNP chips. Such SNP chips are currently used in exactly zero real world (human) medical applications. This is because they are useless as a test with anything near acceptable diagnostic performance. Anyway, the point of the article is that the interpretation of the results may not be accurate, and that is a fairly generous way to put it.
> Such SNP chips are currently used in exactly zero real world (human) medical applications.
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.
There is no medical test that uses these chips. You describe research into genetic associations - that is an entirely different matter.
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.
It tells you if you have the SNP it tests for in those genes. It doesn't tell you anything else.
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.
The majority of people are bothered by it. Having a 1/3 of the ability to detoxify certain things means stresses on other systems. Very few are saying my GS is making me feel foggy and tired but it does.
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.
Associations form the foundation for future reportable SNPs. Many of their tests are now FDA approved. Many of the variants they report have clear and drastic impacts on health.
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.
The FDA approval category is for a ‘genetic risk test’. This is not the same as an FDA approved diagnostic test. All it means is 23 can reliably detect what they claim to test for, and there is some evidence linking a genotype to risk.
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.
Yes I used sequence loosely. The SNP array chips they use (last time I checked) have sufficient resolution to assign chromosomal segments to ancestral populations using the standard hidden markov model techniques.
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.