Is the use of DNA databases worth it or not a concern?
In a discussion at the Royal Society of Biology, DNA data pioneer Sir Alec Jeffreys raised concerns about the potential implications of a national DNA database. The ethical and privacy challenges surrounding such databases are numerous, including privacy violations, consent issues, potential misuse of genetic data, discrimination risks, and national security threats.
Privacy and Consent
DNA, with its deeply personal, permanent, and familial information, poses unique risks when collected and used in a national database. The potential for sensitive information to be exposed without individuals’ fully informed consent could infringe on human dignity and privacy rights. As DNA reveals much more about identity and health risks than general medical or personal data, privacy safeguards must be stronger for DNA data.
Discrimination and Misuse
Misuse of DNA data could lead to discrimination in employment, insurance, housing, and social domains. Algorithmic bias in interpreting genetic data could amplify these issues if certain groups are unfairly targeted or stigmatized based on genetic markers.
National Security Risks
The aggregation of vast genetic databases poses unique security risks. For example, military personnel’s DNA could be exploited to identify family members, vulnerabilities, or create genetically targeted bioweapons. The 2023 23andMe data breach exemplifies the tangible dangers of such data exposure.
Ethical Oversight and Transparency
The need for transparent governance, clear ethical oversight, and accountability is crucial to prevent abuses and maintain public trust. Without these, there is a risk of surveillance overreach, loss of public confidence, and damaging consequences for society.
Sir Alec Jeffreys, known for pioneering DNA fingerprinting, and the Royal Society of Biology emphasize the need for careful management to balance the benefits of DNA databases in criminal justice and research against these serious ethical dilemmas and privacy challenges.
Notable Achievements of DNA Fingerprinting
DNA fingerprinting, first used in a criminal case in 1984, has touched the lives of 50-70 million people worldwide. It has been instrumental in solving more than 17,000 offences each year, reuniting parents with children separated by natural disasters, freeing people on death-row, and identifying plane-crash victims.
In 2008, The European Court of Human Rights ruled that keeping DNA profiles from arrested individuals, regardless of their guilt or innocence, was a violation of people's 'right to a private life'. The limits on the use of genetic data will be determined through social discussion and legislation.
Sir Alec also highlighted the continued importance of DNA evidence in the fight against terrorism, as seen after the Paris attacks. However, he expressed concerns about the potential use of DNA databases for non-criminal purposes, such as identifying instances of non-paternity, which could be culturally sensitive. He also raised concerns about health insurance companies having access to genetic data, as it would be considered blatant discrimination.
In some countries, parents or the state are encouraging genetic testing and organizing marriages to minimize congenital problems, a practice that Sir Alec finds horrifying. The Museum's Who Am I? gallery provides more information about Sir Alec Jeffreys' research at The University of Leicester. The Protecting Freedoms Act 2012 attempts to provide a better balance between the rights of individuals and the security of society.
References:
[1] Royal Society of Biology (2021). DNA data: The ethics of a national database. [Online] Available at: https://www.rsb.org.uk/policy/policy-topics/genome-editing-and-synthetic-biology/dna-data-the-ethics-of-a-national-database/
[2] Wellcome Genome Campus (2021). The Ethics of DNA Databases. [Online] Available at: https://www.wellcomegenomecampus.org/events/the-ethics-of-dna-databases/
[3] European Court of Human Rights (2008). S and Marper v the United Kingdom. [Online] Available at: https://hudoc.echr.coe.int/eng?i=001-106744
[4] House of Commons Science and Technology Committee (2012). DNA databases: Balancing the needs of law enforcement and the rights of individuals. [Online] Available at: https://publications.parliament.uk/pa/cm201213/cmselect/cmscitech/534/53402.htm
In the discussion at the Royal Society of Biology, the potential use of DNA data in health-and-wellness fields was also addressed, with concerns raised about the misuse of genetic data leading to discrimination in various domains such as employment, insurance, housing, and social interactions. Greater ethical oversight is required to prevent these risks.
Sir Alec Jeffreys also underscored the importance of medical-conditions information stored in DNA databases and the need for transparency and accountability to ensure this data is not exploited, potentially violating privacy rights and infringing on human dignity.
