We were alarmed to read the findings of the investigation published in The Guardian into an international network of “race science” activists seeking to influence public debate with discredited ideas on race and eugenics¹. It has long been acknowledged that race is a fluid social, historical, and political construct with no biological or genetic basis². There is convincing evidence that there is more genetic variation within self-identified racial groups than there is between them^3,4. 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 in the recent Royal College of Physicians statement on the history of the UK’s eugenics movement⁵. 

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 databases⁶ 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)⁷. 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 gives the benefits of genomic medicine to all individuals in an equitable, fair and non-discriminatory way.

1. Revealed: International ‘race science’ network secretly funded by US tech boss | Race | The Guardian
2. Smedley A and Smedley BD (2005). Race as biology is fiction, racism as a social problem is real: Anthropological and historical perspectives on the social construction of race. American Psychologist, 60, 16–26
3. Witherspoon DJ et al (2007) Genetic similarities within and between human populations. Genetics. 176(1):351-359
4. Cooper RS, Race in biological and biomedical research (2013) Cold Spring Harbor Perspectives in Medicine, 3 (11)
5. Eugenics summary and history public.pdf (rcp.ac.uk)
6. 23andMe confirms hackers stole ancestry data on 6.9 million users https://techcrunch.com/2023/12/04/23andme-confirms-hackers-stole-ancestry-data-on-6-9-million-users/
7. Walker CR et al (2024) Private information leakage from single-cell count matrices, Cell 187, 1–13