To understand the practice of and public opinion on reproductive genetic technologies, genetic testing and privacy, and related issues, the Center has undertaken multiple social science research projects. While the published results of these surveys are available elsewhere on the site, including in the bibliography, this page also includes links to survey instruments and other background information.

The Center conducted 16 focus groups in six locations on a proposed National Institutes of Health large-cohort study to measure genetic and environmental influences on common diseases. A national survey and a series of town halls on the same topic were also completed as part of the project.

Overview - Making Every Voice Count: Public Consultation on Genetics, Environment, and Health
Article - "Ethical Implications of Including Children in a Large Biobank for Genetic-Epidemiologic Research: A Qualitative Study of Public Opinion"

Article - "Public Expectations for Return of Results from Large-Cohort Genetic Research"

Article - "Subjects matter: a survey of public opinions about a large cohort study"

Video shown at focus groups and town halls

The Center surveyed 1,199 Americans over the age of 18 to measure public acceptance of the use of genetic testing for medical and non-medical purposes, to examine whom they do and do not trust with their genetic information, and gauge their support or lack thereof for laws that would protect them from some forms of genetic discrimination.

White paper - "U.S. Public Opinion on Uses of Genetic Information and Genetic Discrimination" (2007)

The Center asked 186 directors of U.S. in vitro fertilization clinics about their current practices regarding PGD and testing for aneuploidy, and their attitudes and opinions about the technology.

Article - "Genetic testing of embryos: practices and perspectives of U.S. IVF clinics," Fertility and Sterility
Survey Instrument

The Center asked 190 directors of U.S. genetic testing laboratories about their current practices and opinions regarding genetic testing quality and oversight.

Article - "Oversight of US genetic testing laboratories," Nature Biotechnology
Survey instrument

An Internet survey of 2,212 Americans investigated feelings on the moral status of embryos, and on what direction the public would like to see U.S. policy take in this area.

Report - Values in Conflict: Public Attitudes on Embryonic Stem Cell Research (2005)
Survey Instrument

The Center sponsored the research of sociologist of religion John H. Evans of the University of California, San Diego. Evans has conducted interviews with over 180 members of religious congregations across the United States, including Pentecostals, evangelicals, Catholics, Jews, and mainline Protestants. The results shed light on how the religiously oriented public thinks about reproductive genetics, and how these views bear on the public debate.

Article - "Religious Belief, Perceptions of Human Suffering, and Support for Reproductive Genetic Technology," Journal of Health Politics, Policy and Law

One of the criticisms of both quantitative and qualitative opinion research, especially in the area of science policy, is that individuals are asked to comment on issues involving complex technologies which they may have had little opportunity to consider in depth. Thus the Center undertook a project to assess the effect on people's opinions of learning more about the technology and issues, hearing contrasting viewpoints from experts, and engaging in discussion with their fellow citizens about the issues. These engagements took place during the summer of 2004 in six U.S. cities (Sacramento, CA; Seattle, WA; Kalamazoo, MI; Fort Worth, TX; New York, NY; and Nashville, TN) using a town hall format, and with 15 discussion groups online using state-of-the-art Internet meeting capability.

Report - The Genetic Town Hall: Making Every Voice Count (2004)

In 2004 the Center conducted the largest survey to date of American opinions about reproductive genetics. The goals of this nationally representative survey of 4,834 people conducted via the Internet were to test hypotheses and explore issues that emerged from the focus groups and to track trends in attitudes over time.

Report - Reproductive Genetic Testing: What America Thinks (2004)
Article - "Preimplantation genetic diagnosis: public policy and public attitudes," Fertility and Sterility
Article - Religion and Reproductive Genetics: Beyond Views of Embryonic Life? Journal for the Scientific Study of Religion
Survey instrument

We conducted in-depth interviews with 62 people from specialized subgroups (including individuals with a known genetic disease, parents of children with genetic disease, persons with personal experience using PGD, genetic counselors, general health care providers, and PGD providers) to learn more about their attitudes about reproductive genetic technologies and the underlying values that shape these attitudes.

The Center conducted 20 in-depth interviews with geneticists to better understand their perceptions of the roles that they and others play in science policy formation, science education, and discussions of the moral and ethical implications of genetic research and technologies. Participants suggested ways in which scientists, scientific societies, funding bodies and others can help to improve the relationship between science and the broader society.

Report - Reproductive Genetic Testing: What America Thinks (2004)
Article - "Geneticists' Views on Science Policy Formation and Public Outreach," American Journal of Medical Genetics
Methods report

The second phase of the research was a focus group study with 181 Americans in five states. The objectives were to explore the public's knowledge, attitudes and beliefs around reproductive genetic technologies (carrier testing, PGD, prenatal testing, genetic modification and sperm sorting for sex selection, but not cloning) in greater detail.

Article - "Opinions about new reproductive genetic technologies: Hopes and fears for our genetic future," Fertility and Sterility
Report - Reproductive Genetic Testing: What America Thinks (2004)
Methods report

2002 Survey: Reproductive Genetic Technologies

The Center's first research project was a random digit dial telephone survey of 1,211 adults conducted in October 2002. The survey asked respondents about their awareness, attitudes and beliefs about the regulation of in vitro fertilization, genetic testing, preimplantation genetic diagnosis (PGD), genetic engineering and cloning.

Report - Public Awareness and Attitudes about Reproductive Genetic Technology (2002)
Survey questions
Survey responses
Methodology