Self-governance in the Human Genome Editing Era: Can Science Rise to the Challenge?

PROJECT NARRATIVE Human genome editing technologies are evolving rapidly and with this evolution brings questions regarding governance and the ethical implications involved in applying these technologies. The He Jiankui controversy is the primary example of the potential exploitation of HGE and the importance of self-governance. This project will be the first case-study to evaluate self-governance in the realm of human genome editing technologies, the findings of which will be validated through a survey of HGE scientists.

Consumer Protections for Genomics and Precision Health

PROJECT NARRATIVE Consumer protections are of rising importance to the sustainability of personal genomics and mobile health industries and realization of precision health, yet the extent of consumer protections available from the Federal Trade Commission (the primary federal agency in the United States responsible for ensuring online privacy and data security beyond medical settings, for the prevention of unfair and deceptive trade practices of companies that might not be governed by HIPAA, and for promoting innovation) are poorly characterized and have received surprisingly little ELSI re

Integration of multimodal cancer predisposition genetic counseling practices within the pediatric oncology setting

PROJECT NARRATIVE At least 15% of children with cancer have an underlying genetic cause of their cancer, requiring significant counseling regarding therapy modifications, cancer surveillance, and lifestyle changes for both the patient and their family. There is a shortage of qualified genetic counselors available to meet with these families, especially in the stressful setting of cancer diagnosis.

Demographic Patterns of Eugenic Sterilization in Five U.S. States: Mixed Methods Investigation of Reproductive Control of the 'Unfit'

PROJECT NARRATIVE Between 1907 and the mid-1970s, 32 US states passed and implemented eugenic sterilization laws that authorized the sterilization of people considered unfit. Our epidemiological, historical and mixed-methods analysis of over 32,000 eugenic sterilization requests in five US states (California, North Carolina, Iowa, Michigan and Utah) identifies varying demographic patterns and documents changes in how eugenics laws were applied over time.

Current Legal Challenges to Abortion: Implications for Prenatal Genetics

The ability to examine the health of the fetus has expanded dramatically in the last half century. Most of the time, the news is reassuring. However, prenatal screening and diagnosis detect genetic conditions in a small percentage of cases. Effective prenatal intervention for these conditions is still uncommon—few are treatable prenatally. Therefore, when their physician detects a congenital fetal condition, some people choose to terminate their pregnancies. 

Regulation of International Direct-to-Participant Genomic Research

PROJECT NARRATIVE Researchers are now able to use the internet to recruit and enroll widely dispersed individuals, which is valuable for a wide range of research, especially research involving rare genetic disorders. With IRB approval, online recruitment and enrollment of individuals from the same country as the researchers is permissible, including obtaining biological specimens and health information, but it is unknown whether recruitment and enrollment of individuals from foreign countries would violate the laws of those countries.

Engaging adolescents in decisions about return of genomic research results

PROJECT NARRATIVE: Recent recommendations to return children?s results for adult-onset conditions to parents anytime whole exome or genome sequencing is performed, as well as growing expectations to return research results to participants on a large-scale basis, mean adolescents will increasingly be engaged in assenting (<age 18) and consenting (>age 18) to return of genomic research results. There is an urgent need to understand adolescents?

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