Chair of Bioethics

Search

en

Ethics of Genetic Therapies

How do different stakeholders think about gene editing and the potential social and ethical implications?

For many years, scientists have been trying to develop medical treatments that could ‘correct’ genes that led to inherited conditions. In general these are called gene therapies, and more recently they use a new technique called gene editing. These treatments could be used on people of any age (called somatic gene therapy), and also could theoretically be used on eggs/sperm or embryos (called germline gene therapy) or on developing babies during a pregnancy (called prenatal gene editing).  

While gene editing is not happening in Switzerland (as of 2023), there are many clinical trial studies happening around the world and several hundred people have had somatic gene editing for a handful of different inherited conditions. While gene therapies and gene editing treatments could be a very exciting way to treat inherited conditions that previously did not have any treatment, or did not have an effective treatment, there are also some social and ethical implications to think about.  

Our lab is interested in how different stakeholders think about gene editing and the potential social and ethical implications. We are conducting a number of research studies in this area.

(funded by the Health Ethics and Policy Chair)

There is very little that has been published about how the Swiss population thinks about gene editing for genetic conditions. As such, members of our lab are doing several studies.

Part 1:

Understanding how “Experts” in Switzerland are thinking about gene editing technologies, and how they think the ethical concerns identified in other parts of the world will compare to those voiced in Switzerland. We have interviewed scientists, physicians, lawyers, and bioethicists in Switzerland.

Poster on gene editing

Part 2:

In Fall 2023 we sent out a survey to Swiss residents to learn how they think about the social and ethical implications of gene editing.

Poster on gene editing

Part 3:

Building on the data collected in parts 1 and 2 of this study, we are exploring the possibility of conducting a Deliberative Democracy event with the Swiss Public in 2024. This will include several days of knowledge transfer and discussion about gene editing, in order to present a summary of attitudes towards gene editing.

If the event is confirmed to proceed, and you would like to be considered as a participant for this jury, please complete the information here: https://bioethics.ethz.ch/research/GeneEditingEthic/CitizenJury.html

This international study is led by the Mayo Clinic and University of Miami (external page https://www.pasage-study.org/the-study). Kelly Ormond serves as a co-investigator.

The PASAGE Study focuses on gene editing technologies to address a range of genetic conditions, from childhood-fatal diseases to conditions that arise in adulthood. The study aims to gather perspectives from patients, families, clinicians, scientists, and policymakers to understand their views, ethical concerns, clinical hopes, and policy needs regarding prenatal gene editing therapies. Key questions revolve around which conditions should be targeted, who should decide, risk/benefit considerations, and ensuring equitable access to therapies.  

Gene editing for Visual Impairment: Health equity in the development of somatic cell genome editors for retinal disease

(Funded by the NIH, 2024-2025)
 

The NIH Common Fund has currently funded somatic cell gene editing projects through the external page Somatic Cell Gene Editing (SCGE) consortium, with the goal of translating gene editing into the clinic. At the December 2023 consortium kick-off, there were significant discussions about how the basic science grants could work towards a health equity focus so that as projects reach the clinical trials phase, they are well positioned to ensure that the ultimate translation of gene editing happens in a more equitable manner. The current project is a 1-year administrative bioethics supplement to a U19 grant “external page The CRISPR Vision Program: Nonviral Genome Editing Platforms to Treat Inherited Retinal Channelopathies” (external page PI K. Saha, University of Wisconsin-Madison) and will be conducted jointly between investigators at ETH-Zurich and the Univ. of Wisconsin-Madison. The proposal will both address bioethics capacity within the SCGE consortium and provide empiric data to address the specific ethical issues of health equity and justice in somatic cell gene editing for inherited retinal disorders (IRDs).  

We propose three aims:

In Aim 1, we will perform a normative review of the health equity and justice issues for somatic gene editing therapies. This aim will increase bioethics capacity in the SCGE by providing a framework for future work within the consortium, and will also serve as a foundation for the empirical work in Aim 2.

In Aim 2, we will identify the ethical attitudes of patients/family members who have lived experience of retinal disease towards somatic gene editing, with a particular eye towards health equity and justice issues. This empiric bioethics project will include up to 30 interviews conducted in the United States (in English or Spanish) with persons who have a lived experience of IRDs. Topics covered in these interviews will include participant views towards (1) SCGE for IRDs and more broadly, (2) personal values, (3) individual and societal impacts of SCGE for visual impairments, (4) clinical endpoints, (5) consideration of potential risk and benefit across the translational pathway (clinical trials, early clinical availability), (6) information that they feel would be critical in order to provide informed consent for a future clinical trial or clinical administration of genome editing for IRD.

Finally, in Aim 3, we will integrate the experiences of Aim 1 and 2 to construct guidance for the other SCGE grantees that will help them consider the potential approaches toward community engagement and health equity in their future work.
 

Project staff: Kelly Ormond (site PI), Kirsten Riggan, Eirini Petrou

Information to come.

Want to learn more about attitudes towards gene editing? Here are some links to our prior publications:

Articles

“How genome editing will change humanity”. Live Interview, Economist Babbage Podcast, March 9, 2023. external page https://www.economist.com/human-genome-editing-pod

“Human gene editing: Promise and Peril”. Live interview, BBC World Service, March 9, 2023. external page https://www.bbc.co.uk/programmes/w3ct36bg  


Presentations

Presentation from the 3rd International Gene Editing Summit (London UK, March 2023) --from approximately 2:38:30 until 2:51:20: external page https://www.youtube.com/watch?v=zZklzrd5seU&list=PLg7f-TkW11iXEvtH5uchUBtF1FRpoVjhU&index=1

 

In German:

 

In French:

 

In English:

Reports on genome editing from international and non-governmental agencies:

JavaScript has been disabled in your browser