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