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CRISPR Gene Editing Teach-Out

Impacts of Human Genome Editing / Lesson 2 of 10

Democratizing Gene Editing - Josiah Zayner

5 minutes

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In the previous video, Françoise highlights different ethical challenges associated with different types and uses of human genome editing. She explains that while there is much support for research involving the genetic modification of somatic cells for therapeutic purposes (to make people better), there is considerable controversy surrounding research involving the genetic modification of germ cells (to make better people).

As you learned earlier, an edit to a germline cell could be passed down to future generations and there is concern that society could be harmed by human enhancement. Thus, not all human gene editing is equal. There are many questions to discuss:

Should genetic engineering be limited to somatic (body) cells, or should edits to germline cells that would be passed to future generations, also be permitted? Should human gene editing be limited to therapeutic purposes, or should enhancement purposes also be allowed?  Whose genetic material is included in gene banks?  Who gets access to treatments?

In the next video, Josiah Zayner speaks to how CRISPR has captured the public’s attention. He touches on the importance of universal access to gene editing technologies. If this tech is only available to a select few, we run the risk of having issues like inequitable access to medicine and new class divides.

We then hear from Jonathan Marron, a pediatrician at Chapel Hill as well as an expert on medical justice in research and clinical application. He explains how historical inequities impact how people participate in and benefit from medical research. He also explores how, in the present day, there has been deliberate action to rectify these inequities.

Jonathan continues this conversation on inequity in medical research in the third video. Some diseases, such as sickle cell disease, have received inequitable research on medical interventions. There is also concern that databases, such as the GWAS collection, represent mostly white individuals – meaning there is a severe lack of representation of people of color. To fix this inequity, Marron emphasizes the importance of community engagement and stakeholder intervention.

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