Combatting the discriminatory use of genetic data

There have been tremendous advances in genetic science that have the potential to bring enormous benefits to humanity. However, there are concerns that genetic data could also be misused as a tool for discriminating against groups, such as ethnic minorities or people with genetic predispositions to health conditions. Such discrimination could occur in a variety of areas, including employment, healthcare, education, policing and the justice system, and the provision of goods and services, such as insurance. The concern that genetic data could be used for discriminatory purposes is rooted in bitter and painful historical experience. Crimes against humanity based on racism have left a lasting mark on our collective history, including the murder of approximately 1.5 million Armenians during the 1915 genocide, as well as the murder of more than 6 million Jews and approximately 500,000 Roma during the Holocaust of World War II, known by Roma as the ‘Porajmos’. Discrimination against Black people and other ethnic minority groups has also been influenced by discredited theories of ‘race’, such as those promoted by the Eugenics movement in the nineteenth century. Nevertheless, discriminatory practices have persisted in many States, including, for instance, the forced sterilisation of Roma women and the ethnic profiling of minority groups by the police. In 1997, UNESCO issued the Universal Declaration on the Human Genome and Human Rights, which stipulates in Article 6 that: ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ In my view, there is a need to update equality and discrimination legislation in States to include a prohibition on the use of genetic data for discriminatory purposes in accordance with Article 6 of the UNESCO Declaration. In the meantime, there is an urgent need to educate the judiciary, lawyers, and the public about the risks associated with the use of genetic data and the safeguards that must be in place to ensure that its retention and distribution are lawful. In the absence of up-to-date legislation, courts can develop case law to protect individuals and groups from discriminatory practices by applying existing laws. However, such developments can take time and may lead to inconsistencies and anomalies. Nevertheless, decisions of supranational courts, such as the European Court of Human Rights, could contribute significantly to advancing the protection afforded to individuals and groups in a coherent and consistent manner. There is likely to be resistance to the introduction of legislative safeguards from scientists, corporations, and politicians who are keen to exploit the use of genetic data to its full potential within a relatively relaxed regulatory regime, even if such a regime allows some scope for discriminatory uses. Such resistance will need to be overcome if the most vulnerable members of society are to be protected from the misuse of genetic data.

1 Email: marcw@gclaw.co.uk.