Skip to main content

Explore our curated collection of resources including top publication outlets for ELSI scholars, Centers of Excellence in ELSI Research, ELSI databases and research centers, genome research consortia, statutes and legislation related to genomics, and bioethics resources.

1 - 10 of 69

The 2020 Public Attitudes Toward Genetics & Genomics Research Literature and Polling Review Report was produced by Jameson Communications for the American Society of Human Genetics (ASHG) to inform ASHG’s public education and engagement work and serve the broader field.

  • ASHG
  • research literature review
  • polling review
  • public attitudes
  • national polls
  • Genetic Research

The LawSeq℠ team, overseen by co-principal investigators Susan Wolf, JD, Ellen Wright Clayton, MD, JD, and Frances Lawrenz, PhD, has curated this database of articles from journals and professional society publications that are useful for understanding genomics law.

  • Genomics
  • search tool
  • LawSeq
  • genomic laws
  • legal resource
  • secondary sources

The Statement Archive of the American Society of Human Genetics is a record of advocacy work by the organization for the purpose of promoting evidence based policies that benefit science, personal and public health, and society. The archive includes analyses of emerging policy issues, comments on pending legislation, and correspondence with legislators.

  • legislation
  • statement
  • statement archive
  • Policy
  • Public Health
  • Regulation

Position Statements of National Society of Genetic Counselors (NSGC) reflect concrete applications of the Society's Code of Ethics and require a majority vote by the NSGC Board of Directors.

  • position statement
  • Risk
  • limitation
  • genetic ethics
  • implications
  • advisory
  • Recommendation

The National Society of Genetic Counselors (NSGC) provides practice guidelines and resources on several topics, a Practice Guideline Development Manual and COI Disclosure Form, a list of topics for which practice guidelines are in development, and links to retired NSGC Practice Guidelines.

  • practice guideline
  • manual
  • evidence review
  • disclosure survey
  • expert review
  • proposal form

The Advocacy Committee of the American College of Medical Genetics and Genomics (ACMG), chaired by Sheila Dobin, releases policy statements to promote the responsible application of genomics in medicine.

  • genetic information
  • points-to-consider
  • policy statement
  • consideration
  • Recommendation
  • genetic technology
  • Sheila Dobin

The Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG), chaired by Francesca Forzano, discusses and issues statements on the responsible translation of technological developments in human genetics.

  • Human Genetics
  • Policy
  • position statements
  • Research
  • debate
  • Recommendation
  • clinical practice
  • laboratory genetic services

This Joint Position Statement from the International Society for Prenatal Diagnosis (ISPD), the Society for Maternal Fetal Medicine (SMFM), and the Perinatal Quality Foundation (PQF) includes a consensus opinion and points to consider on the use of genome‐wide sequencing for fetal diagnosis in clinical and research settings.

  • position statement
  • International Society for Prenatal Diagnosis
  • ISPD
  • Society for Maternal Fetal Medicine
  • SMFM
  • Perinatal Quality Foundation (PQF)
  • genome‐wide sequencing
  • fetal diagnosis

This position statement, issued by the ASRM Ethics in Embryo Research Task Force and the ASRM Ethics Committee and published in 2019, addresses ethical considerations in embryo research.

  • position statement
  • Ethics
  • embryo research
  • American Society for Reproductive Medicine
  • ASRM

This ASRM Ethics Committee opinion published in 2018 outlines key points to consider in the development of identification and disclosure of sex policies at clinics that perform PGT with a primary medical goal.

  • ethics committee opinion
  • preimplantation genetic testing
  • PGT
  • sex policies
  • American Society for Reproductive Medicine
  • ASRM