Legal rights to DNA have yet to keep up with the times

Unravel the legal issues surrounding ownership of DNA samples

By Tiffany Idle Working at an NHS genetics diagnostic lab brings with it some inside knowledge on the law surrounding the use of DNA samples. Despite requiring consent for the use of blood from patients, once the DNA is extracted, no consent is required for anything beyond that point. There are freezers full of old DNA samples, some from the 90s, which can be used whenever needed and for whatever purpose required. Of course, they are currently only used for the benefit of the patient, or anonymised and used as positive controls for other patients, but the same cannot necessarily be assumed of a private company.

The Human Tissue Act of 2004 only protects any material that contains, or is likely to contain, complete cells, which is not applicable to extracted pure DNA. The ability to test DNA, and ownership of genome sequences, does not involve the person from whom the DNA was obtained. Furthermore, the person does not have legal ownership of the knowledge acquired from sequencing, which, when tied to personal details could be quite sensitive information for both the person and their family members.

The main benefit of this is in driving forward progress in scientific research. Large quantities of data can be obtained from genome sequences, which can be studied and utilised without the usual consent implications that can hinder research involving human tissue samples. This is because an individual cannot block the dissemination of important findings, or applications of these findings, by claiming ownership of a particular gene or genetic feature. This is more straightforward in genetic research than it is in the commercial sector.

Companies such as AncestryDNA™ and 23andMe™ provide personal genetic analysis services that are increasing in popularity, with the global market estimated to increase to approximately £7.7 billion by 2020. They claim to provide information about a customer’s heritage, what fitness plans would work best for them and predisposition or presence of genes related to certain health conditions, such as Parkinson’s disease. The reliability and interpretation of the findings can be somewhat dubious at present, with the companies stressing that customers should not use these kits for diagnostic purposes; however, this may improve as time goes on.

These companies do have a policy restricting use of the genetic data that they acquire; they can only use it for their own services, for the improvement of these services and to aid in research. There is very little incentive for public or private services to use genetic data in a way that would cause a scandal or an unfavourable news report, as this would result in a loss of public trust or a loss of customers. Despite this, close examination of how data will be used and familiarisation with the listed terms and conditions, should be encouraged when considering giving genetic information to any DNA-testing service. Legislation is yet to catch up with the pace of change in this field and there are calls to put pressure on governments to ensure that such companies are properly regulated. This would help protect consumers by preventing companies from introducing unsavoury practices, for example selling data to health insurance companies to allow the justification of price hikes or reduced coverage depending on personal risks. Better regulation would also allow each individual to make a fully informed decision.

In the future, similar services could become more integrated within healthcare systems, with possible outsourcing of data collection and analysis to private companies. The fast pace of improvements to sequencing technologies means that this could accelerate the development of genetic health services. If all goes well, it could play a part in the advancement of personalised medicine: the likelihood of developing a disease, it’s progression, particular treatment effectiveness, and prognosis would all be specific to the patient. The future of medicine could be “all for one”, rather than “one for all”.

From Issue 16

For more information, see:

https://www.hta.gov.uk/policies/human-tissue-act-2004 (accessed 19/10/2018)

https://www.theguardian.com/science/2017/jul/23/what-i-learned-from-home-dna-test-kits-are-they-accurate-or-worthwhile (accessed 26/10/2018)

https://www.ancestry.com/cs/legal/dnaterms_2017_05_22_us (accessed 19/10/2018)

https://www.23andme.com/en-gb/about/privacy/ (accessed 26/10/2018)