Chair of Bioethics

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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.

Did you receive a letter about our survey?

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

If you have received a letter, please find information about the survey here: https://bioethics.ethz.ch/research/GeneEditingEthic/Survey.html

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 (funded by the Health Ethics and Policy Chair).

 

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.

If you have received a letter, please find information about the survey here: https://bioethics.ethz.ch/research/GeneEditingEthic/Survey.html

 

Part 3:

Building on the data collected in parts 1 and 2 of this study, we intend to conduct 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 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 pagehttps://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.  

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 pagehttps://www.economist.com/human-genome-editing-pod

“Human gene editing: Promise and Peril”. Live interview, BBC World Service, March 9, 2023. external pagehttps://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 pagehttps://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:

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