We know that people who are highly religious have more concerns with genetics in medicine than other people. Genetics in medicine includes activities such as prenatal genetic testing, gene editing, and the development of mRNA vaccines such as the Moderna and Pfizer-BioNTech Covid vaccines. In this project, we seek to better understand why higher levels of religious practice are related to greater concerns with genetic medicine. Gaining insight into this might help healthcare to better serve the many people in the US who are religious: Ninety percent of the US public believes in some kind of higher power, 55% pray daily, and most health disparity populations are more highly religious than the general US public. This 3-year study is funded by the National Institutes of Health’s National Human Genome Research Institute (NIH NHGRI).

First, we will conduct a national survey with 5,000 adults in the US. The Healthcare, Values, and Spiritual Life Survey asks about personal religious and spiritual beliefs and attitudes toward key healthcare activities that involve genetics—particularly prenatal genetic testing and the use of mRNA vaccines. Building on what we learn from the HVS Survey with the US public, we will then conduct 180 in-depth interviews with faith leaders from six major religious groups (Catholic, Evangelical, Mainline Protestant, Black Protestant, Jewish, and Muslim). Faith leader perspectives will help us interpret our survey findings and identify ways genetic medicine can respectfully and constructively engage with people of faith about healthcare.

Funding: NIH Ethical, Legal and Social Implications R01; 1R01HG012830-01; 9/22/2022 – 6/30/2025

Project team:

• James M. DuBois, DSc, PhD, Principal Investigator
• Lauren L. Baker, PhD, Co-Investigator
• Jenine Harris, PhD, Biostatistician
• Erin Solomon, PhD, Senior Staff Scientist
• Kari A. Baldwin, MSW, Senior Project Manager
• Scott Thumma, PhD, Recruitment Consultant
• Gabrielle Kennedy, MDiv, MBA, Recruitment Consultant

People regularly make difficult ethical decisions about their healthcare. Not surprisingly, people who are highly religious primarily rely on religious teachings when deciding what is right and wrong. All major religions have teachings on controversial moral issues such as abortion, prenatal genetic testing, physician-assisted suicide, and organ donation. However, some religious teachings related to healthcare are complex, not widely known, or challenging to apply in concrete situations.

No one has yet studied how often highly religious people make difficult healthcare ethics decisions, whether they have access to healthcare ethics consultation (HEC) services, whether HEC providers feel qualified to serve the needs of people from diverse faith groups, and how highly religious people, including their faith leaders, would prefer to meet HEC needs. With funding from the BF Foundation, we will study these important issues.

First, we will survey 3,000 highly religious people to identify the healthcare ethics decisions they grapple with, the assistance they seek, and the gap between what they seek and what is available. We will conduct follow up interviews with 30 participants to gain greater insight into these issues. Second, we will conduct 180 surveys and 30 interviews with HEC providers. Third, we will interview 30 faith leaders. With both HEC providers and faith leaders we wish to understand how well prepared they feel to address complex healthcare issues from a religious perspective, and what resources they would welcome.

Building of the results from these surveys and interviews, we will explore several real-world options for better meeting the needs of highly religious patients, such as: (a) establishing a national network of faith-based HEC providers who can be accessed via phone or videoconferencing, (b) creating bioethics training programs for faith leaders, or (c) developing a faith-based healthcare ethics website that addresses issues highly religious people most struggle with from diverse faith perspectives.

Funding: BF Foundation Gift

Project team:

• James M. DuBois, DSc, PhD, Principal Investigator
• Annie Friedrich, PhD, HEC-C, Co-Investigator
• Erin Solomon, PhD, Senior Staff Scientist
• Kari A. Baldwin, MSW, Senior Project Manager
• Heidi Walsh, MPH, CHES, Senior Project Manager
• Felicia Cohn, PhD, Consulting Content Expert

Health researchers and professionals sometimes seek to partner with faith communities to improve public health. Past engagements with faith communities have focused on diabetes, hypertension, cancer screening, HIV/AIDS, infectious disease prevention, and maternal and child health. To improve community health, professionals may try to change certain behaviors such as diet, exercise, and participation in health screenings and vaccinations.

We are conducting a systematic review of articles that describe collaborations between health professionals and faith communities on vaccines, genetic testing programs, and colorectal cancer screening. We want to answer the following questions:

• How have health professionals collaborated with faith communities?

• What are the goals of these collaborations?

• How often do health professionals seek to offer information and listen to the needs and concerns of faith communities?

• How are these collaborations received by faith communities? What appears to work well, and what are opportunities for improvement?

We search through thousands of articles and are currently analyzing 122 articles that report on collaborations between health professionals and faith leaders. Findings will be used to help identify and develop models of effectively and respectfully engaging faith communities to improve public health.

Funding: NIH Ethical, Legal and Social Implications R01; 1R01HG012830-01; 9/22/2022 – 6/30/2025, and BF Foundation Gift

Project team:

• Ana S. Iltis, PhD
• Lauren L. Baker, PhD
• Kari Baldwin, MSW
• Lucas Cruz
• Lauren H. Yaeger, MA, MLIS
• James M. DuBois, DSc, PhD