The first in our genomics ethics blog series from work package 6. Unpacking the top line ethical issues within cancer genetics.
This is a key jumping-off question for Work Package 6’s ethics work in Cangene-Canvar (CGCV).
Using the word ‘should’ is not meant to generate hand-wringing or imply CGCV’s work is ethically problematic – far from it! Rather, ‘should’ signposts that we are making the ethical case for the project. This case is separate from a science, business, or even tech case, though these too will have ethical dimensions.
Broadly speaking, the ‘how’ question splits into:
How the data collection/use is managed
How the collection/use is trusted and worthy of that trust
Both ‘hows’ highlight a theme of ethical governance. Firstly, we need to demonstrate how the systems and institutions managing data operate in a justifiable and trustworthy way. In particular, how should we think about genomics in relation to the institutions of research and clinical practice? In some cases (e.g. 100K Genomes Project) the use of genomic sequencing has been seen as occupying a translational ‘gap’ between these institutions or as a research-care hybrid. But does this help its cause? Similarly, do bricks and mortar institutions such as hospitals, data hubs, universities and companies – and the flows of data between them – support or hinder genomics data projects like CGCV and do they have justifiable reason to?
Secondly, what (if any) rights or obligations do patients and the public have with respect to the collection of genomic and related healthcare data? This is assuming that there will be benefits in cancer healthcare to individual patients and whole populations from projects like CGCV. At one extreme, we could argue people have a right to veto any uses of their data, even if it benefits others. At the other, we could say they should not have a choice about contributing their data. What justifiable middle ground exists between extremes?
In addition to governance, trust is another important theme in projects like CGCV. Even though a project may be worthy of trust (with, for example, ethically defensible arguments and in possession of the appropriate ethics approvals), actual trust comes only from appropriate public involvement and consultation. On this point, we are fortunate in CGCV to have a highly engaged and experienced Patient Reference Panel (PRP). They are our window into the lived experience in cancer genomics, and an active gauge for trust in the project. WP6 looks forward to the first PRP ethics consultation planned for June 2021.
Watch this blog space for a regular unpacking of some of these top line issues: governance; institutions (especially genomics as a research-clinical practice institutional hybrid or gap occupier); trust and trustworthiness; and the impacts of genomics data for populations and individuals.
About the Author
Dr Kate Sahan is a Research Fellow in the Ethical and Social Implications of the Clinical Use of Genomic Risk in Cancer Care. She studied for a DPhil in Population Health at the Ethox Centre from 2016-19. In 2019-20 Kate was a postdoctoral researcher at Erasmus Universiteit, Rotterdam where she explored the global challenges of implementing Responsible Research and Innovation policy.
Kate’s research interests include: the ethics of emergency research governance; ethics of decision-making in research more generally including how ethics policy translates to practical and cultural change for individuals and institutions; and population health ethics, most recently focusing on the challenges and opportunities genomic medicine brings to improving cancer patient care through CanGene-CanVar.