• 16th August 2021

In January 2021, the European Society of Human Genetics (ESHG) published an article here  with an accompanying press release here condemning the coercive collection of DNA samples.

The ESHG rightly drew attention to the damage that such coercive collection of DNA samples could cause to a) the individuals from whom those samples are collected, and b) to the professional reputation of those involved in the field of genetics more widely.

ESHG called for:

  • An end to compulsory DNA collection where it occurs
  • An end to international research collaboration with those collecting DNA unethically
  • Publishers to more effectively vet ethical approvals relating to genomic studies
  • Suppliers of equipment and reagents to consider their position relative to the ethical practices of their customers

The BSGM have reflected deeply on this statement.  We wish to express the Society’s complete support for the statement, and encourage those in the UK genomics community to digest its content. 

However, if we focus only on criticising current international controversies in DNA collection practice, we miss the opportunity to acknowledge the problematic history of our field, and the necessity of safeguarding against such practices closer to home.  Building public trust starts with being honest about our past.

Geneticists should always bear this in mind as we strive to increase genomic knowledge, and care and advocate for those affected by genetic conditions. It would be naïve to assume that all use of samples and data in the research environment has been impeccable in our country over the years, and we have certainly contended with our own health data use scandals. Casting a light on past errors will help avoid future pitfalls.

We welcome continued public debate from all stakeholders in the use of genomic technology and data for healthcare and research purposes. Exemplars for good practice such as the oversight provided to the National Genomics Research Library in England by the Participant Panel at Genomics England are vital.  National projects bring with them key performance indicators, and it is important that these support transparent conversations regarding data use rather than uptake of participants enrolled for research if coercive recruitment and collection is to be avoided. Independent oversight, together with practices that support meaningful conversations between health professionals and participants, are the way forward.

When accessing genomic data for research, we challenge the research community to consider the provenance of those data, and whether those data sources can demonstrate that samples were collected with genuine consent, and are supported by processes and infrastructures (such as research ethics committees) that are fair and transparent.   

ESHG is right in highlighting that public trust is easily lost and that this would be disastrous for our field.  The correct collection, use and governance of genomic data is a complex topic but can often be simplified by asking the question: what would I say if it was my DNA?