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Ethical Issues Related to Research Uses of Residual Dried Bloodspots from Newborn Screening
Newborn screening for metabolic and genetic disease is arguably one of the greatest public health interventions—notwithstanding some ethical challenges and opportunities for improvement—because it…- residual specimen
- Newborn screening
- genetic disease
- public attitudes
- Consent
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News
ELSI in Review • July 2022
About this listing ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our July 2022 set explores regulations for direct-to-consumer… -
News
Solicitation of Nominations for the 2022 NHGRI’s Outstanding Award for Enhancing Diversity, Equity, Inclusion, and Accessibility in the Genomics Workforce
View Notice online Notice Number: NOT-HG-22-014, Release Date: June 7, 2022 Purpose The National Human Genome Research Institute (NHGRI) solicits nominations for its first annual Outstanding…- Applications Grants
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Collection
Abortion and the Genetic Counselor: The Impact of Restrictive Legislation on Genetic Counseling Practice
The first class of genetic counselors graduated with an M.A. from the Sarah Lawrence College in 1971; less than two years later, the Supreme Court decision in Roe v. Wade legalized abortion in all…- genetic counselor
- genetic counseling
- abortion
- prenatal genetic testing
- legislation
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Collection
Addressing Algorithmic Unfairness in Healthcare Artificial Intelligence
Artificial intelligence (AI) healthcare technology can solve our most complex and intransigent health issues. It has the potential to enhance healthcare quality, improve access, reduce cost, and…- Artificial intelligence
- Data Set
- Data Collection
- Big Data
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Collection
Ethical Challenges in Obtaining Informed Consent for Genetic/Genomic Research
Obtaining informed consent (IC) for genetic/genomic research is complicated because most of the ethical issues associated with genetic research are considerations to be disclosed by researchers and…- Informed Consent
- Genetic Research
- research oversight
- Broad Consent
- Communication
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News
Using a Family Advisory Council to Understand the Informational Needs of Prospective Gene Therapy Trial Participants: An Interview with the Co-PIs of the SCDGENE CERA Working Group
Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since 90…- sickle cell disease
- gene therapy
- Sickle Cell
- gene therapies
- community based participatory research
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News
ELSI in Review • June 2022
About this listing ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our June 2022 set explores distributed ledger technology in… -
News
CERA Statement Against the Weaponization of Genetic Research
The shooting in Buffalo that resulted in the deaths of ten Black Americans is one of many in a series of tragedies that have resulted from systemic racism. We condemn white supremacy and the misuse…- racism
- Behavioral Genetics
- Eugenics
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News
All of Us Research Program Seeks Input on Environmental Health Data
The National Institutes of Health’s All of Us Research Program has issued a Request for Information (RFI) to gather public suggestions on integrating environmental health data…- All of Us Research Program
- Environmental Health
- request for information