Document is current

Article History

Received: 1 July 2022

Accepted: 4 February 2023

First Online: 11 February 2023

Declarations

: The following disclosures provide transparency about positions held by the authors related to either polygenic score clinical standards development, or community engagement best practices development. Hannah Wand is co-chair of the NIH ClinGen Consortium’s Complex Disease working group, lead author of the National Society of Genetic Counselors practice resource on polygenic scores, and a committee member for the American College of Medical Genetics practice resource and laboratory Q&A on polygenic scores. Daphen Martschenko is a guest editor for this special edition, and a member of the Hastings Center working group for social and behavioral genomics, which looks at the ethical responsibility of polygenic scores. Ting Pun has served on the advisory panel for patient engagement for the Patient Centered Outcomes Research Institute as a patient member.

: Euan A. Ashley is a co-founder of Deepcell, Personalis, and SVEXA; a board member of AstraZeneca; and an adviser to Apple, Foresite Labs, Nuevocor, and Sequencebio. Stuart A. Scott is a paid consultant of Sema4. John S. Witte is a co-founder of Avail Bio and is paid expert work from Pfizer and Sanofi. Hannah Wand, Daphne O. Martschenko, Annamaria Smitherman, Sheryl Michelson, Ting Pun, and Mildred K. Cho declare no financial conflicts of interest.

: This study did not require IRB review. Patient and Family Partners are enrolled and trained as Stanford Health Care volunteers. Participants are considered working group members in working groups with Stanford faculty, rather than serving as research participants. The Patient and Family Partner Program managers were extensively consulted about appropriate permission processes for publication. At the introductory call, during the contracting process, all participants expressed an interest in disseminating this information to the external scientific community (see Supplementary Note ). Verbal consent was obtained to record and transcribe meetings, and written permission was obtained by email to write and publish this manuscript. In the email requesting permission, community members were informed on the goal of manuscript writing and a general outline of content to help them decide if this manuscript was an appropriate publication on behalf of the group. Four community members volunteered to meet regularly and engage in the manuscript writing process as authors. All community members were sent draft and final versions of the manuscript for approval. Community members were asked to include a motivation statement and their name in acknowledgments at their volition; only one member opted out and is acknowledged as an anonymous member.