Ethical, Legal, and Social Implications for Gene Editing
Ethical, Legal, and Social Implications, also known as ELSI, is a field of study that looks at non-technical issues when creating and implementing new technologies and scientific advances into society. In the SCGE consortium, we are interested in understanding how ELSI issues impact somatic cell genome editing research and treatments for patients, families, caregivers, and broader communities. Learn more about some of the recent and current ELSI issues in genome editing and genomics below.
For ethical, legal, and safety reasons, the SCGE program does NOT support any research activities on genome editing in reproductive (germ) cells.
Current ELSI Issues in Somatic Cell Gene Editing
There are many ELSI issues in somatic cell genome editing. Here are a few of the current issues:
Financing of Research
- How are funds being distributed?
- Which genetic conditions are receiving funding, and which are not?
- How is money equitably allocated to both rare and more common conditions?
- Is it ethical to require companies to make drugs that would not make a profit?
Access to Clinical Trials
- Who is made aware of clinical trials?
- Where are the clinical trials held geographically?
- If the trials are time-consuming, which people/families are able to take time off work/make childcare arrangements/etc. and travel to receive therapies and any related care?
Informed Consent
- Do researchers make sure that every participant understands the information regardless of their health literacy level?
- Can language barriers impact how well participants understand informed consent?
- What ethical issues arise when parents or guardians make informed consent decisions for children or people with mental disabilities that cannot make the decision themselves?
Cost and availability after approval
- If a therapy is approved, who is going to be able to afford the therapy and related care?
- Where geographically will the treatments be available?
- Which insurances will cover costs for these therapies?