The right not to know. Return of incidental findings and the ‘right not to know’ in the context of personalised medicine and genetic testing
Organisers: Prof. Konrad Basler & Dr. Anna Deplazes Zemp, UZH.
Invited experts: Dr. David Townend (Maastricht University), Dr. Mark Taylor (University of Melbourne Law School) & Dr. Andrew Furley (University of Sheffield) /
Date: 24 - 25 October 2019, 09:00 - 17:00
max. Participants: 45
Location: University of Zurich, room to be announced
Credit points: 1.0
Costs : free
Priority: none

Return of incidental findings and the ‘right not to know’ in the context of personalised medicine and genetic testing

The cost of whole genome and exome sequencing has plummeted over the last two decades. In relation to specific gene tests we are now either at or rapidly approaching the point at which it will be economically sensible to sequence the entire genome once rather than conduct multiple specific gene tests. As the costs of storing more data, for longer, also fall, we raise the near distant prospect of many individuals having whole genome sequences (WGS) stored for research studies and as part of their medical record.

As our understanding of the significance of any genetic variant for a person’s (future) health is emerging more slowly than our capacity to capture and store the information, we must confront very many questions around appropriate use and reuse of WGS data. At the forefront of some of the most difficult of those questions are those which relate to ‘incidental’ or ‘additional’ findings.

Objective of the course
This course will provide PhD and master students with an advanced and integrated understanding of legal rules, concepts and principles relevant to return of incidental and additional findings, including those relating to informed consent and the ‘right not to know’. Students will be challenged to critically examine, analyse, interpret and assess the effectiveness of the legal rules, principles and concepts and to be an engaged participant in contemporary debate regarding development of law and good practice in relation to return of results.

Extra information
If an individual’s WGS is held, then it is possible to not only interrogate that sequence for gene variants relevant to the principal condition under investigation: either that relevant to the scientific research question or, in a clinical context, to the condition for which a patient presents for treatment. It is possible to incidentally discover or purposefully seek out ‘additional’ findings about an individual’s genetic predisposition or susceptibility to other conditions that have a genetic component. This will include, at times, variants that indicate an elevated risk of serious conditions in circumstances where action could be taken to reduce that risk.

There is, as yet, no consensus on which, or whether, ‘incidental’ findings should be routinely returned to patients or research participants, nor on good practice regarding searching for ‘additional findings’. Where there are significant resource costs implicated in: genetic counselling; interpretation; return of results through appropriately trained professionals; and uncertainty regarding responsibilities to continue to re-interpret WGS data in light of emerging knowledge, it is not clear what choices individuals should be given with regard to return of results. There is also evidence of divergent views between public and health professionals.

Where information is gathered, either incidentally or as an additional finding, then there may be a tension between a professional’s duty of care toward the data subject and an individual’s own ‘right not to know’. The familial nature of genetic information also raises questions where – particularly with the move toward personalised or precision medicine – the information held within an individual’s record may be considered relevant to an understanding of the need for, or the safety or effectiveness of, a particular treatment for a family member.

back to course overview