Public Policy Positions
The Society strives to ensure that policymakers understand the value and potential of human genetics research to benefit people everywhere. To that end, it is essential to consider, develop, and support policies that enable research progress, improve personal and public health, and thoughtfully consider how genetic information is used in society.
Policy Positions
Research is providing remarkable insights into the human genome and powering our ability to translate it to improve healthcare. Scientific progress relies on continued public investment in biomedical research, including fundamental, translational and clinical research. Robust, predictable, sustainable federal funding of research not only fuels the next generation of scientific advances, it creates a biomedical research enterprise that generates diverse scientific career paths and powers local, state, and national economies. The Society recognizes the enormous value of public support for biomedical research and believes it is imperative that taxpayer dollars are spent judiciously.
- FY25 Public Testimony to House Appropriations Subcommittee on LHHS
- ASHG Thanks Congress for Sustaining Support for Biomedical Research, Urges Congress to Pass FY’24 Appropriations
- ASHG Highlights Inclusion of Human Genetics in White House Bioeconomy Report
- Supporting Federally Funded Research
- Supporting Geneticists in Advocating for Research
Diverse participant cohorts in genetics and genomics research enables researchers to study variation across the human genome and the genetic factors that influence health and disease, as well to ensure that every segment of the population can benefit from research advances. ASHG supports policies that foster the recruitment of participants from diverse populations in genetics research. As more genetically tailored therapies come to market, it is important that the evidence base allows for their appropriate administration in all patients to reduce and one day eliminate health disparities.
- ASHG 2022 Follows Up on Community Engagement Guidance with Early Career Professionals
- ASHG Issues New Guidance on Addressing the Challenges of Polygenic Scores in Human Genetic Research
- ASHG Issues New Guidance Addressing Underrepresentation in Genomics Research Through Community Engagement
- Advancing Diverse Participation in Research
The public is a major beneficiary of genetics research, and also a vital partner in it through participation in research studies. ASHG supports strong protections to ensure the rights and welfare of research participants. The Society believes researchers must minimize potential harm to participants and be clear about potential benefits as well as risks of participation in a study. At the same time, it is important that compliance with regulations designed to protect participants is not overly burdensome for researchers and institutions.
Advances in gene-editing technologies now allow researchers worldwide to modify DNA sequences inside living cells quickly, cheaply, precisely, and efficiently. It is possible that genome-editing techniques could be incorporated into human-assisted reproduction and thereby introduce changes that are passed to future generations. ASHG believes that, at this time, given the nature and number of unanswered scientific, ethical, and policy questions, it is inappropriate to perform germline gene editing that culminates in human pregnancy.
However, there is no reason to prohibit in vitro germline genome editing on human embryos and gametes, with appropriate oversight and consent from donors, to facilitate research on the possible future clinical applications of gene editing. There should be no prohibition on making public funds available to support this research. The future clinical application of human germline genome editing should not proceed unless, at a minimum, there is (a) a compelling medical rationale, (b) an evidence base that supports its clinical use, (c) an ethical justification, and (d) a transparent public process to solicit and incorporate stakeholder input.
ASHG supports policies that foster a more diverse and inclusive genetics and genomics research workforce through strong collaborations across academia, industry and government. Greater research workforce diversity is crucial to ensuring varied perspectives and experiences inform, enrich, and benefit the scientific agenda.
Policies that support scientific freedom and responsibility are essential for advancing fundamental discoveries, clinical advances, and innovation. The Society will also advocate for policies that allow researchers to pursue scientific knowledge in an inclusive and collaborative environment.
The Society supports policies that foster the broad sharing of scientific and clinical data. With the unprecedented volume of genomic and associated data generated today, it is critical that data are shared with the scientific and healthcare communities to accelerate discovery and inform clinical care. Data sharing deepens our understanding of genomic variability and the genetic underpinnings of disease, leading to advances in research and medicine and maximizing the investment of public dollars. Data sharing must be conducted in an ethical way that respects research participants and patients and protects their privacy.
Advances in DNA sequencing technologies mean that it is now possible to conduct genomic analyses, including analysis of the entire genome of an individual human, that just a few years ago would have been too costly and slow. As a result, research programs are now exploring the use of genomics for different clinical applications. A number of policy questions arise from such applications, such as when it is appropriate for researchers to share research results with study participants, and how laboratories navigate regulations governing the reporting of research results to patients and their healthcare providers. The Society supports research and other initiatives that inform such questions. ASHG also believes there are important differences between clinical research and routine medical practice, and it is important for geneticists and research participants to agree when participants can expect to receive genetic information about themselves from a study.
The potential for genetics-based tools to enhance healthcare will only be fully realized if health insurance coverage policies foster their appropriate use. Government health insurance programs and private payers should establish clear policies about the coverage of genetic tests and associated services that improve healthcare. Given the rapid pace of genetic discovery and innovation, policies should allow for the adoption of new tests emerging from novel technologies, advances in our understanding of the relationship between genetic variation and disease, and research demonstrating the clinical utility of a new test in patient care.
It is possible to detect fetal genetic abnormalities through a number of genetic testing techniques (such as amniocentesis, chorionic villus sampling, and non-invasive prenatal screening of maternal cell-free DNA). This ability empowers parents to make informed reproductive decisions. The Society supports the right of women to terminate a pregnancy in which a fetus is diagnosed with, or is at significant risk of having, a serious genetic or congenital disorder. ASHG opposes laws that prohibit women from exercising this choice or that limit their access to reproductive services.
The rapidly expanding role of genomics in healthcare decisions is increasing the demand for qualified genetics professionals. ASHG supports the state licensure of certified genetic counselors to help the public access genetic and genomic services provided by qualified health professionals. Many health plans recognize genetic counselors are important members of the healthcare team and depend on them to help provide state-of-the art genetic services. Licensure provides genetic counselors with vital credentials to bill and seek reimbursement for services, and will expand the qualified workforce needed to provide genetic and genomic services for the growing number of patients and families that need them.
The Food and Drug Administration, the Centers for Medicare and Medicaid Services, and the Federal Trade Commission all play roles in regulating genetic tests and testing laboratories. ASHG supports oversight that assures that tests are both high-quality and evidence-based. Regulatory agencies should work together to minimize the burden of laboratory compliance with regulations.
Oversight rigor should be calibrated to the level of risk associated with the use of a test, with lower oversight for lower-risk tests. The regulatory burden should also be lower for research laboratories offering low-volume tests that are not commercially available. Given the complexity and volume of data generated, and the rapidly evolving evidence base about genomic variant pathogenicity, the Society supports innovative approaches for the oversight of sequencing-based tests.
Collecting a patient’s family medical history remains the single most important and informative genetic test for most individuals. This information can help identify a genetic predisposition for disease, guide subsequent testing, and inform prevention strategies to maintain health. ASHG supports the funding of initiatives to foster the clinical use of family history, such as educating healthcare providers and the public about its value and the development of tools that help patients collect and share their family history with their doctors. The Society supports policies that encourage the adoption of electronic health record systems that incorporate and use family history.
ASHG supports the judicious protection of intellectual property to promote genetics research and the development of healthcare applications. The Society opposes the patenting of naturally occurring genetic material. Patients and providers must be able to access genetic testing that is not limited by exclusive licensing or inappropriately expensive tests.
A person’s genome includes information on his or her risk for disease, ancestry, and relatedness to others. ASHG believes that, regardless of purpose, disclosure of this information should be entirely voluntary. Similarly, ASHG believes surreptitious testing of individuals to be unethical, and supports measures that prohibit such testing. In establishing privacy protections, it is critical to avoid imposing undue restrictions on the conduct of genetics research, which is already subject to federal regulations that protect the rights of research participants, including informed consent.
The study of human genetics challenges the traditional concept of different races of humans as biologically separate and distinct. It is important for the research community to continue to contribute new fundamental knowledge to the societal dialog about ancestry, supporting greater diversity in research, continuing to engage the field and public to build genetic literacy, and addressing misconceptions of genetics and ancestry.
ASHG supports policies that ensure that an individual’s genetic information cannot be used against them and has long supported the establishment of strong protections against genetic discrimination. For 13 years, the Society advocated for the U.S. Genetic Information Nondiscrimination Act (GINA) until it was passed into law in 2008, thereby establishing new protections for Americans against genetic discrimination in the workplace or through health insurance. The Society continues to advocate for the robust implementation of GINA, and for similar protections outside the United States.
ASHG opposes laws, regulations, and any other efforts intended to restrict reproductive freedom or to constrain freedom of choice based on known or presumed genetic characteristics of potential parents or the anticipated genetic characteristics, health, or capacities of potential offspring. Such efforts are scientifically and ethically unacceptable.
Genetics is an important part of K-12 education, including patterns of inheritance, gene expression, genetic variation, evolution, and the ethical, legal, and social issues associated with the use of genetic technologies. Children should have the benefit of a comprehensive genetics curriculum. ASHG opposes efforts that undermine the teaching of evolution, or that attempt to establish a false equivalence between evolution and alternative explanations about the origins of life that are not science-based.
All Letters & Responses
Interested in learning more about ASHG’s public policy work? Read ASHG’s letters and other responses to current events, legislation, requests for information (RFIs), and more here.