University of Minnesota

Since 2023, Shire Scientific has led the Somali Community Advisory Board for GC-PRO, a national study of genetic counseling run by the University of Minnesota with the University of South Florida and funded by the National Human Genome Research Institute (grant R01HG011916). Our collaboration on this program ran to May 31, 2026.

How it began. Before anyone designed a program, Dr. Shire and University of Minnesota colleagues, led by Dr. Heather Zierhut, interviewed 11 key informants from Minnesota's Somali community about genetics and genetic services. Views were framed by faith and culture, and misinformation and distrust kept people away. The study was published in the Journal of Genetic Counseling in 2019.

The board. The Shire Somali GC-PRO Community Advisory Board has eight members, Somali men and women with a broad range of backgrounds, from pediatricians to parents to accountants. It met with the research team five times, in person in Minneapolis, between 2023 and May 2025.

What the community said. Most people have never heard of genetic counseling, so explain it first. Faith and science belong together: as one member put it, God plans everything, but God also tells us to take precautions. Recruit in person, through people the community trusts. Give the main message in plain words, and use spoken Somali with English captions.

What changed. The study added in-person recruitment and a Somali student researcher, produced an informational card for the community, built the board's advice into the skills taught to genetic counselors, and won a grant to bring four community boards together.

A shared research agenda. In 2025, twelve members of four community boards met in Minnesota and agreed three priorities: work with primary care clinics to encourage more people to see a genetic counselor; learn which counseling techniques are best according to patients and the community; and find out whether educational projects make people more aware of genetic counseling. The results were published in the Journal of Genetic Counseling in 2026 with Dr. Shire as a co-author.

Publications. Johnson VR, et al. Journal of Genetic Counseling. 2026;35(4):e70270. Fisher ER, et al. BMJ Open. 2024;14(4):e085472. Cheung FY, et al. Journal of Genetic Counseling. 2019;28(4):887-896.