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Since the beginning of the Human Genome Project, funds were set aside at the National Institutes of Health (NIH) to fund research on the ethical, legal and social implications (ELSI) that would be raised by the work of this program. Examples of the kinds of ELSI topics to address range from issues about privacy, workplace discrimination, consent processes, and conflicts of interests in genomic research, to genomic testing of minors. What do you know about GINA? Do you know who Henrietta Lacks is or have you heard about HeLa cells and her contribution to genetic research?
Jesse Gelsinger and Dr. Wilson are 2 other individuals who together made another impact on genetics research. Jesse had a rare metabolic disorder called ornithine transcarbamylase deficiency (OTCD) that prevents the body from breaking down ammonia. Jesse had a fairly mild variant of this genetic condition and with special diet and medication was able to lead a relatively normal life. He volunteered (he was 18 at the time) to participate in clinical trial of a new gene therapy treatment at the University of Pennsylvania in 1999 and died as a result of his participation. Find out more about this tragic case and its impact on the field of gene therapy and how it raised a number of ethical issues related to informed consent and financial conflicts of interest.
I think a good place to start looking for ELSI topics that might interest you is https://www.genome.gov/about-genomics/policy-issues
Alternatively, you can google ELSI (or a portion thereof) genetics issues or some other terms to see what comes up. (Theres a Personal Genetics Education Project at https://pged.org/ that might inspire some thoughts.) (Theres even a Global Genomics Nursing Alliance- Check it out at: https://www.g2na.org/index.php)
See whats in the research literature about a specific issue such as cloning or how CRSPR is being used to benefit society at large vs. individual patients.
Heres an opportunity to view a recording from June 24, 2020 through the National Institute of Nursing Research specific to Genomics. The link below provides the agenda and has a link to watch the videocast. Check it out at https://www.ninr.nih.gov/newsandinformation/events/socialgenomics2020?utm_campaign=socialgenomics&utm_medium=email&utm_source=govdelivery
You can watch the whole 5 hours and 13 minute recording or maybe just a session or two. How intriguing is this session title? Lovesick: How Couples’ Relationships Influence Health. Many of the sessions are led by nurses.
Want to find out more about direct to consumer genetic testing and its ethical implications especially in regards to police access to the data to solve criminal cases?
There are plenty of learning opportunities that you can engage in this week. What I want you to do with the information that you discover about an ELSI topic that interests you is to then share it within your small group discussions.
Course Student Learning Outcome #6: Describe ethical, legal, cultural, social, and policy implications of genetics/genomics on the publics health.
Heres what to do.
Contemplate what aspect of the Course Student Learning Outcome you want to investigate and share.
Explore some of the resources Ive provided in this section as well as the Weekly Additional Resources posted within the course content.
Delve into more detail with further investigation of credible sources relating the ELSI to genetics and health.
In order to share the information (that has citations and references) with your peers create a presentation- it can be as simple as a document, a video, a powerpoint or prezi presentation. Be as creative as your school time allows.
Make sure youre explicit in explaining how the information links to ethics, legal, or social aspects of genetics and what it entails for personal or public health. In other words, how are you meeting the student learning outcome?
Do ask if you have any questions or concerns.
Want to see the grading rubric? Click HERE
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