We were concerned to read the findings of your investigation into an international network of “race science” activists seeking to influence the public debate with discredited ideas about race and eugenics (Revealed: International ‘race science’ network secretly funded by US tech boss October 16).
As organizations 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 compelling evidence that there is more genetic variation within self-identified racial groups than there is between them. It is also widely recognized that the eugenics movement of the late 19th and early 20th centuries was not based on scientific evidence, as recently outlined 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 recognize that it may not always be possible to prevent malicious actors from hacking data sets and databases and from making link attacks (attempts to re-identify individuals in an anonymized data set by creating a link to link the stored data with other available information to combine). At the same time, we call on those who legally own genomic datasets to ensure that access procedures are governed by robust and transparent processes, including on how decisions are made whether the proposed research is in the public interest or not.
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 efforts to gain access to genomic datasets, which offer so much hope for patients, especially those with rare conditions, 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 of already underrepresented ancestry – 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 emphasize the importance of developing a health care service that provides the benefits of genomic medicine to all individuals in a fair, just and non-discriminatory manner.
Bill Newman
President, European Society of Human Genetics
Demetra Georgiou
Chairman, British Society for Genetic Medicine
