Do You Own Your DNA?

Group 16

Companies such as ‘23andme’ and ‘Ancestry.com’ offer a service where, for a fee, users receive information about their genome which includes both ancestry and health information.

The recent increase in usage of services raises several ethical considerations concerning how the public’s DNA data is used. If the government received data from these third parties, would this invasion of privacy be worthwhile to protect the country from crime?

Catching Crooks and Curing Cancer

In April 2018, a forty-five-year manhunt came to an end; the serial killer and rapist known as the Golden State Killer had finally been identified. Although the DNA of the perpetrator was on file for many years, law enforcement had been unable to find a match. That changed when officials searched a database of DNA samples intended to help find long lost relatives. A close relative of the perpetrator had at some point submitted their DNA, which was enough for police to track down and arrest the killer. This highlights the main argument for giving the government access to private company’s DNA data. This is a Utilitarian argument, in which a reduction in privacy for a small set of the population (customers of DNA services) results in a significant increase in the safety and well-being of the whole population. Increasing the government’s DNA database is useful for tackling instances of crime – geneticists estimate that if 2% of the population used DNA testing services, 90% of people of European descent could be found in a similar manner to the Golden State Killer.

Arguments against data sharing tend to focus on an individual’s wishes for their data not to be shared because of how it would make them feel. However, the majority of people may be in favour if they could reap the benefits to the justice system without their own data being shared. Contractualism suggests that we would all reach the same correct moral decision if we were unbiased and thought nothing for ourselves. Arguments concerning personal privacy run counter to contractualism because they depend on each person prioritising their own privacy over others.

Another potential use of having extensive DNA data on the population is the opportunity for more advanced research. A centralised location for a country’s DNA data would be invaluable for various fields of research concerned with targeting genetic disease. This agrees with the utilitarianism principle, as medical research has the potential to (and often does) save lives. This benefit greatly outweighs the infringement of privacy for the estimated 5.2% of the UK population in the database.

Users of DNA services agree to the terms and conditions that their data can be sold on to third parties. Such third parties could include the government, so the government having automatic access to the data would not further infringe on the privacy of users. The privacy of the population remains intact as only those who use DNA services and thus agree to these terms share their data.

DNA – No Way!

Privacy is more than an emotional preference; protection of private and family life is a human right enforced by international law. Ethics of care utilises the empathy of individuals to make fully ethical decisions; without empathising with individuals, these decisions don’t actually cater to the whole group. By allowing the government to access information not willingly given and without a due cause, the public’s right to maintaining their genetic privacy is violated and care ethics ignored.

The government accessing more DNA data also facilitates prejudice. The government is an ever-changing process working to its own preservation and benefit, it can’t be guaranteed to use the information for the same good in the long term. For example, the Chinese government tracks CCTV, social media and historical criminal offences to assign people with ‘social scores’, granting or denying people certain privileges. The Barnabas Fund reports that the system has discriminated against minorities, such as Christians, denying them freedom of religion and the ethics of care.

As a qualified human right, the courts decide the importance of people’s privacy; Blair’s government made legal changes in 2001 and 2003 to increase government rights, but that government was sued and the laws were withdrawn for unnecessary invasion.

Research into DNA collection at crime scenes has exposed many errors, in spite of the low likelihood of coincidental matches (below 1 in a million). When DNA is scarce, investigators often use highly sensitive methods involving only one cell. In the first 5 years since the 2001 law change, over 10,000 offences had false DNA ‘matches’ and reversed convictions. Most details about these errors are confidential. We don’t know how well the government uses the data with intellectualism and providing more DNA encourages a confirmation bias to find a match, irrespective of the accuracy of the result. Obstructing access reduces the public’s potential for harm with wrongful conviction, as well as encouraging the virtues of professionalism and striving for quality.

With all of the arguments given above, it is clear that the general public doesn’t know enough about their rights or the potential benefits of giving them up, to reasonably argue either way. The Human Genetics Commission conducted a citizens’ enquiry about issues surrounding the National DNA Database – they found a unanimous agreement that the public was not educated about their rights, regarding their DNA and how it is used. Kantian Theory states that people’s moral autonomy should be respected, thus they ‘should (be able to) determine what is morally right through reasoning’. (Van de Poel and Royakkers, 2011, p95) As well as abandoning intellectual ethics by intentionally neglecting an informed decision, acting without the public understanding makes the public become a ‘mere means’ to political aims and opposes Kantian theory.

Decision

In conclusion, we believe the government should be given access to third-party DNA data.

29 thoughts on “Do You Own Your DNA?

  1. In a Western democracy, it is perfectly acceptable for DNA to be held by the state and made accessible to the authorities when it comes to law enforcement. In this respect, it is no different from accepting CCTV in our streets. To combat crime and terrorism, it is in the public’s interest for the authorities to have access to this information.
    The key question is the use to which this data is put and the nature of the authorities wanting to use it. In a totalitarian state like China, for instance, access to DNA by the state in order to monitor citizens and curb human rights is obviously morally questionable.

  2. Although having access to people’s DNA without their consent can certainly be seen as an invasion of privacy, I feel like this wouldn’t necessarily be as volatile as some of the other private information which is already being readily collected by organisations such as Google and Facebook.

    For example, while the case you’ve given regarding false matching is concerning, if someone were to maliciously obtain this information, I don’t see us being advanced enough yet for them to produce a DNA sample from that data to somehow falsely incriminate a crime seen, or whatever other use they may find for it.
    However, people are already willingly signing away a wealth of more immediately incriminating data, such as their locations, internet habits etc. Considering the possible benefits, adding DNA to the pile doesn’t seem like such a big deal.

  3. It would be interesting to see the rate of cases prosecuted 2010/2015 onwards that are reversed due to false matches as I imagine it would be far less with the advances being made in forensics. So long as the data is securely stored, I don’t see an issue with the state police force holding such information, and with the new op-out donor system coming, it may actually aid in finding donors quicker.

    1. Thanks for your reply. Was wondering if you could elaborate on why you think an opt out scheme would aid in finding donors quicker, and do you know any more details about the scheme (links etc).

    2. Read this article and I can see both sides of the argument. Personally at the present time I see no issue with the authorities having access to our DNA data. If you’re not committing a crime I can’t see a problem, obviously if you’re a criminal you will think differently. Ask me this in the future if we have a totalitarian government I may answer differently!

      1. Thanks for your reply. You say ‘If you’re not committing a crime I can’t see a problem’. One of the links in the article you might be interested in is-

        https://www.heraldscotland.com/news/12440889.guilty-by-a-handshake-crime-scene-dna-tests-may-not-be-as-accurate-as-we-are-led-to-believe/

        It’s suggested that innocent people can be linked to a crime scene they have never been to simply by shaking the hand or brushing past someone actually involved. If this is the case, how does this change your view?

  4. There are many reports of false DNA matches during criminal investigations, but I see no reason there couldn’t be false readings when people submit their DNA, or mix up’s resulting in DNA samples getting switched after individuals send them in. Would it be acceptable to rely on a database that may contain such errors in matters as important as incrimination?

  5. Obviously the system is not yet perfect, mistakes are made and unscrupulous investigators could use it wrongly, but given improved safeguards the future benefits seem to outweigh the risks. If the legal system takes merely circumstantial evidence such as DNA as the sole basis for a conviction then that is not proof “beyond reasonable doubt” and its the fault of the legal system not the DNA evidence. From a medical viewpoint there may even be an argument that in future NHS records should all include DNA from birth.

  6. Obviously the system at present is not perfect, but given continued improvements in safeguards the overall benefits do seem to outweigh risks.
    If the legal system is using DNA circumstantial evidence as the sole basis for convictions then that is not proof “beyond reasonable doubt”.
    In future it may be that our own medical treatment as well as research to help others make it worthwhile for DNA to be automatically included in our patient records from birth.

  7. The author has mentioned contractualism, but I believe a further insight into the historical concepts of the social contract would provide a broader ethical background to fully consider this issue.

    One of the main moral problems, outlined in the article, is the trade-off between privacy (individual benefit) and potential (though not guaranteed for everyone) benefits. This is a classic example of individual vs society (government) conflict. A very shallow utilitarian analysis would suggest enforcing the DNA collection to have an obvious positive impact, though it is needed to actually look at the root issue – the legitimacy of the society to constraint an individual.

    (For the sake of simplicity, I will omit one of the most prominent social contract philosophers, as Jean-Jacques Rousseau believed that the people often do not know their “real will”, and that a “great leader” should rise to power and decide the morals for us and enforce it, even against our will. As the subjective character of someone’s vision places the burden of being moral and right not on us, our divagations would be pointless.)

    Thomas Hobbes argued, that a basic form of social contract indeed brought some benefits to those who decided to cede some of their personal liberties. However, following the same path of reasoning, the governments/organised societies would not obey any rules in the same way as people without having “signed” the social contract were living in chaos and anarchy. Therefore, there must be some limitations or some law of reciprocity posed on the state to mitigate totalitarianism and any lawlessness and arbitrariness in the government’s actions, which almost certainly at some point would be harmful to its citizens.

    John Locke believed that the state formed by the creation of social contract should be limited and act as a “neutral judge” with limitations in disrupting personal liberties, as it derives its legitimacy from the population. John Locke also argued that humans in the state of nature would behave morally and the government (formed by a social contract) is only enhancing this natural state of balance. Thus, such measures as enforced DNA database would be unnecessarily extensive.

    Therefore, it can be argued, that by holding to the right of personal privacy the government can be more controlled and improved by the citizens and the aforementioned practice can be deemed as unnecessary.

    Good article. I recommended it to a friend.

  8. There’s probably a good utilitarianist argument to be made against testing – unless I over-looked it.
    This is a good article, with lots of good sources cited. Balanced on both sides, do try and bring in the theories. You made good use of them but a bit more wouldn’t hurt.

  9. It seems to me that this is a case where the potential benefits seem to outweigh the drawbacks. I very much agree with Alex Pearl’s comment where he states that the answer to the question initially posed would very much depend on which world governments we’re talking about. I hesitantly suggest, that in a western democracy, it wouldn’t be outrageous to trust DNA data to be used wisely, responsibly, and for genuinely good purposes. However, across the world, I see countries where this confidence is instantly extinguished. For example, it is indeed shocking to see some of the things already happening in China, particularly against Christian religious freedom. Under greater access to public DNA, the Chinese government would find it even easier to pursue Christians in China, a group already much in hiding and having to meet underground for fear of persecution. The Associated Press in fact, reported in 2018 that “Xi is waging the most severe systematic suppression of Christianity in the country since religious freedom was written into the Chinese constitution in 1982.”, which has involved “destroying crosses, burning bibles, shutting churches and ordering followers to sign papers renouncing their faith”. Very, very worrying!

  10. I see no problem with governments having access to third party DNA, providing it for specified and limited use, such as part of a criminal investigation. In order for this to be so I think 2 things need to be in place: independent oversight and strong privacy controls. People should be confident that their genetic information will not be obtained by prospective employers, insurance companies and so on.

  11. Let us imagine that the government were to turn corrupt and try and use this information against me, it strikes me there are two ways DNA recognition could infringe my privacy. Firstly by revealing my family’s past, however in the current era where all identities are thought of as social constructs, this would carry little impact. Secondly by use as false evidence, to which I would respond that I cannot forsee a world were this becomes the only evidence used legally, and alibis, technological forms of evidence etc. would still protect a person from false accusation.

    Finally I’d like to ask to what extent is DNA private as recognition devices used across Britian (such as CCTV and airport recognition devices) effectively record and identify people by the outworking of their DNA. When a person walks down a street they are effectively seeing (recording) and remembering (storing) DNA information about a person (obviously not the list of genetic code, but the appearance of a person which is in part the outworking of DNA). Hence DNA recording is and always has been inherently public as an identifier of persons. And we would be privatising what is already public not vice versa.

    1. Thanks for your reply. One thing you say which I don’t initially agree with is that people view their identity as a social construction, therefore meaning they wouldn’t mind information about their families past being made public.

      Their are other social constructs that people are very passionate and sensitive about, for example their home town identity or their set of expertise. Extrapolating from these observations I suspect most people do care about their family history.

  12. Once you’ve submitted your DNA to a third party, you’ve lost control over who has access to it. If you don’t want it to be used, don’t donate it. With that said, I don’t think everyone who signs up to these services is aware of the extent to which they’re allowing information on their DNA to be used, which I think is the larger issue.

    1. Thanks for your comment. One aspect you may have overlooked is that identification of the majority of the population is possible with only a minority of the populations DNA. The argument then goes wider – we need to ask how reliable that identification is (some documents suggest not always very!)

      1. Good point. I think the fact that the majority can be affected by the minority’s DNA being available is unavoidable though so I wouldn’t really consider it as realistically considerable (we can’t ban these tests because someone else might be identifiable through them).

        In terms of the reliability of identification, if they’re not reliable then they shouldn’t be used.

  13. From Marti:

    “The issues arise when people live in countries where human rights are not so prevalent & that knowledge & power can be abused.

    Plus, do I trust our govt?
    No! Would be the answer.

    However, DNA is an extremely useful tool in terms of catching & convicting people of crimes that they would otherwise escape justice for.

    In the cases of tiny percentages of DNA (so not enough to get a full match, but a familial match only), I think there needs to be other concrete & not circumstantial evidence. For example, eye witness accounts are not always accurate or correct. People can accidentally falsely identify someone. But with a failed polygraph test, eye witness accounts & then the familial DNA – I believe would make a safe conviction.

    The statistics show over 10,000 overturned verdicts in the case of small amounts of DNA. This doesn’t necessarily mean that all 10,000 people were innocent.
    It could just be a legal loophole that the conviction is unsafe.

    I think to close that loophole & to prevent innocent parties being convicted – if there is no other evidence apart from a fraction of DNA, then I don’t think the case is sound. In cases of full DNA match, I believe the case to be sound.

    And I do think that the authorities should have access to private companies DNA database, but that we need a separate governing body to oversee this process & ensure abuse of power is non-existent, or kept to an absolute minimum at the very least.

    No system is perfect & nothing is 100% foolproof, but DNA has brought many grieving families some justice. I don’t think that should be removed.”

  14. From a contact who wants to remain anonymous –

    I’ve read the article. I think DNA is good to be used for criminal investigation, but should not be used for other uses unless there is a serious reason, for example a medical problem where a DNA aspect may help. Otherwise it may be an infringement on privacy.

  15. From Anna –

    I think governments should be allowed access to DNA stores because realistically they’re a good way of finding who’s guilty, and once you take away evidence that’s had times where it was faulty in the past, you’d have none left. It’s as they say, if you have nothing to hide, you have nothing to fear.

  16. Personally, I don’t see a problem with the Government having access to the DNA, especially as you would have volunteered to send it off, knowing that third parties would have access.

    The only issue comes with the use of said DNA. Obviously, it’s a postive if DNA is used to solve crimes but as NickH above states, there should be steps in place to ensure that the DNA does not just get given to anybody such as insurance companies. If these steps were in place, then I would be for the Government having access.

  17. Personally I have no problem with the Government having access to the DNA. Especially, as it has been voluntarily sent off knowing a third party will have access.

    The problem comes with the use of the DNA. Obviously, if it is being used to solve crimes. that is a positive. But, as NickH states above, there should be steps in place to prevent the DNA being accessed by lots of different people or organisations such as insurance companies. If these steps were in place I would be for the Government having access.

  18. From Mish:

    I don’t trust the government to be able to hold my data secure. If it’s there, it’s able to be hacked or used maliciously. If the DNA database would be used by the NHS for identifying diseases or donor matches, then the benefits could more easily outweigh the deficits, but this particular application isn’t worth trusting the government to implement.

  19. Very interesting discussion. It always depends on the system – cyber security is a constantly changing problem so the security of the information can never be 100% guaranteed. That said, companies like Google have access to a huge amount of our data anyway. Would more criminal cases arise due to this data existing or would it be reduced because the data can be used. Very interesting!

  20. From Earl:

    I personally think police should have access when needed. I think most non-criminals should want the best possible chance of catching criminals. I think DNA samples should be kept away from the police by and independent company but be allowed access when needed.
    My main worry is police corruption.

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