We were alarmed to read the findings of your investigation into an international network of “race science” activists seeking to influence public debate with discredited ideas on race and eugenics (Revealed: International ‘race science’ network secretly funded by US tech boss, 16 October).
As organisations representing leading researchers and clinicians working in human genetics, we can state unequivocally that race is a fluid social, historical and political construct with no biological or genetic basis. There is convincing evidence that there is more genetic variation within self-identified racial groups than there is between them. It is also widely recognised that the eugenics movement of the late 19th and early 20th centuries was not based on scientific evidence, as set out recently by the Royal College of Physicians in a statement on the history of the UK’s eugenics movement.
We firmly believe that equality, equity, diversity, inclusion and respect for data privacy are central to improving healthcare through research. We recognise that it may not always be possible to prevent malicious actors from hacking datasets and databases and from making linking attacks (attempts to re-identify individuals in an anonymised dataset by creating a link to combine the stored data with other available information). At the same time, we call on those who hold genomic datasets legitimately to ensure that access procedures are governed by robust and transparent processes, including about how decisions are made on whether or not the proposed research is in the public interest.
We are aware that there is public unease about some aspects of genomic research, much of it stemming from the history of scientific racism and the activities of the eugenics movement. It is therefore highly regrettable that attempts are being made to access genomic datasets, which offer so much hope for patients, particularly those with rare conditions, in order to misuse and misrepresent genomic data in this way. We are also concerned that unscientific, politically driven “studies” of this nature may inhibit individuals – especially those from already underrepresented ancestries – from donating to biobanks, and, in turn, delay the development of diagnoses and treatments for their conditions.
We condemn all attempts to describe race as determined by genetics and stress the importance of developing a healthcare service that provides the benefits of genomic medicine to all individuals in an equitable, fair and non-discriminatory way.
Bill Newman
President, European Society of Human Genetics
Demetra Georgiou
Chair, British Society for Genetic Medicine
