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 about race and eugenics (Revealed: International ‘race science’ network, in 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 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 pointed out by the Royal College of Physicians in a statement about the history of the British eugenics movement.
We believe that equity, equality, diversity, inclusion and respect for data privacy are central to improving healthcare through research. We recognize that it will not always be possible to prevent malicious actors from hacking datasets and databases and conducting linkage attacks (attempts to re-identify individuals in an anonymized dataset by creating a link to combine the stored data with other available information). At the same time, we call on those who legitimately hold genomic datasets to ensure that access procedures are governed by robust and transparent processes, including how decisions are made as to whether or not the proposed research is generally is important.
We are aware that there is public unrest about some aspects of genomic research, much of which stems from the history of scientific racism and the activities of the eugenics movement. It is therefore deeply regrettable that attempts are made to access genomic datasets, which offer so much hope for patients, especially those with rare conditions, only to misuse and misrepresent genomic data in this way. We are also concerned that unscientific, politically driven “studies” of this nature could discourage individuals – especially those from already underrepresented ancestors – 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 delivers the benefits of genomic medicine to all individuals in an equitable, fair and non-discriminatory manner.
Bill Newman
President of the European Society for Human Genetics
Demetra Georgiou
Chairman of the British Society for Genetic Medicine