Professional Practice and Social Implications Committee Action Plan

In April 2020, the Board of Directors approved this Action Plan and a phased implementation of the listed activities over the next three to five years in support of the Strategic Plan. The activities will be reviewed by the Board for funding on an annual basis.

Strategic Issue:

ASHG envisions a world in which people everywhere realize the benefits of genetics and genomics research and seeks to build understanding and appreciation of that research to advance science, health and society. The Society affirms that realizing the benefits of emerging research requires it to be conducted and applied responsibly. As the largest genetics and genomics research professional society, ASHG has unique capacity and responsibility to identify and highlight key issues, lead the development of best practices, and train its members and the broader research community to integrate strategies that address social, ethical and legal considerations and practices in research.

Desired Outcomes:

• ASHG members and the broader research community will have increased awareness of the ethical, legal and social issues researchers face in the conduct of their research and have more tools (e.g. guidances, online resources, webinars) to navigate them successfully.
• ASHG will be a primary forum for addressing emerging social and ethical issues in genetics and genomics research and thus the Society will foster a vibrant, engaged community where these issues can be examined and addressed collaboratively.
• Because diversity in genetics and genomics research cohorts is a scientific imperative and the foundation for accurate and equitable genetics applications, ASHG members will better understand historical barriers to broader research participation and will actively and competently incorporate responsible and ethical research practices that promote diversity and inclusion in genetics research, including knowing how to recruit diverse cohorts effectively.
• Because of its member engagement and training, ASHG will be recognized by the biomedical research community as a prominent partner on advancing the responsible conduct of genetics and genomics research.

Guiding Principles:

• As a membership society of 8,000 researchers, ASHG has the capacity and a primary responsibility to use its reputational authority, reach, and forums to engage and train members in responsible research practices.
• Given the wide range of ethical, legal, and social implications (ELSI) issues, the committee should help the Board identify those topics that would benefit most uniquely from ASHG’s voice, and support efforts by the Society to engage in sustained work to bring about positive and lasting change in research practices.
• Training the next generation of researchers is among the most powerful ways to shape ethical and responsible research practices, and ASHG strategies should prioritize collaboration with entities engaged in research training, such as universities and NHGRI.
• ASHG has a unique role and primary expertise related to genetics research, and it has a commitment to the broader uses of the knowledge that is generated through genetics research. Topics that move beyond research into clinical practice or other facets of society might require or benefit from collaborations with, or deference to, groups and institutions that have core strengths in those areas of interest. Proposed partnerships on topics beyond research should be discussed in advance with the Board and receive approval on the basis of considerations such as relevance, capacity, timeliness, and cost.
• The Society affirms the larger good of genetics research to advance science, health and society. In consultation with the Board, ASHG activities should work to acknowledge and realize the benefits of research while also honestly and rigorously addressing the limits of science and real ethical challenges that arise in the pursuit and dissemination of genetic knowledge and novel applications.

Action Plan:

1. Provide genetics and genomics researchers with tangible and practical tools to address ethical dilemmas in research
   
   Scientists face many social challenges and ethical questions when conducting genetics and genomics research.  ASHG can provide great benefit to its members and the broader research community by providing guidance to researchers trying to navigate these issues.
   1. Publish Written Guidances
      Issue guidances for researchers in the American Journal of Human Genetics on how to integrate ELSI considerations into responsible research practices and navigate challenges in the conduct of genetics and genomics research.  Priority topics (with topics at the top of the list being the most pressing) include:
      • Ensuring the socially responsible application of polygenic risk scores and avoiding their misuse
      • Engaging under-represented populations on research participation
      • Handling the disclosure of results in the context of large-scale biorepositories
      • Avoiding group harm resulting from the misuse of genetics research findings or the inadvertent cooperation of genetics researchers in oppressive government practices
      • Consent for research use and commercialization of data gathered through health system implementation and learning healthcare system projects
      • Navigating interstate and international policy barriers obstructing inclusive research, including secondary research
      • Guidance on speaking to the media on ELSI issues faced by researchers
2. Develop a graduate level curriculum on ELSI issues as a resource for genetics and genomics research training programs
   1. Anecdotal information suggests that genetics and genomics research trainees receive little education on the ethical, legal, and social issues they might face when they become independent investigators. Currently, there are few resources for universities and colleges wishing to incorporate ELSI into scientific training. ASHG can help address this through the development of an ELSI curriculum and programming to encourage its adoption. To pursue this goal, ASHG will explore potential partnerships and funding opportunities.
      1. Survey/needs assessment and curation of available resources
         Conduct survey to identify what ELSI training programs and resources already exist and identify barriers to implementing successful ELSI training programs for bench scientists.  Compile and curate ELSI courses, modules, videos, etc. used in these programs and, to the extent possible, make available to members. Identify gaps that need to be filled.
      2. Development of a curriculum
         Identify strategies and partners for development of an ELSI curriculum. Potentally in conjunction with partners, develop curriculum covering the essential ethical, legal and social issues faced by a genetics or genomics researcher.
      3. Facilitating adoption of curriculum
         Potentially in conjunction with partners, develop and execute a strategy for dissemination and adoption of curriculum at higher learning institutions in conjunction with identified partners.
3. Year-round ASHG-provided training for researchers
   Programming complementing ASHG Guidances will help foster the adoption of ASHG recommendations by researchers. Such programming, and potentially additional programming on other key topics, can provide a value service to members in helping them enhance their research practices.
   1. Year-round programming promoting adoption of ASHG recommendations
      Use a variety of strategies to inform and engage the ASHG membership year-round on ELSI topics for researchers, including best practice recommendations in published Guidances or topics identified through the development of the ELSI curriculum. Strategies will vary according to the topic and the needs of the research community, but may include the list below. With respect to guidances, programming will encourage and facilitate adoption of ASHG’s recommendations.
      • Up to 3-4 webinars and interactive online sessions annually
      • Online compilations of resources
      • ASHG Annual Meeting events (e.g. co-labs) and engagement at other scientific meetings (e.g. AAAS)
      • Member discussion fora
      • Fact sheets
      • Hypothetical case studies
      • Highlighting illustrative examples from members’ research
      • Reddit-style Q & A for members
      • Talking points on topics of interest to the public