Campbell-Salome, Gemme https://orcid.org/0000-0003-1377-5705
Jones, Laney K.
Walters, Nicole L.
Morgan, Kelly M.
Brangan, Andrew
Ladd, Ilene G.
McGowan, Mary P.
Wilemon, Katherine
Schmidlen, Tara J.
Simmons, Emilie
Schwartz, Marci L. B.
McMinn, Megan N.
Tricou, Eric
Rahm, Alanna K.
Ahmed, Catherine D.
Sturm, Amy C.
Funding for this research was provided by:
National Heart, Lung, and Blood Institute (R01HL148246)
Article History
Received: 12 May 2022
Accepted: 17 March 2023
First Online: 5 April 2023
Declarations
:
: Upon review, the Geisinger IRB determined that this project was not a systematic investigation designed to develop or contribute to generalizable knowledge as defined at 45 CFR 46.102(1), and was therefore not research. All procedures performed in studies involving human participants were in accordance with the ethical standard of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Participants agreed verbally to participate in interviews and in writing to complete surveys.
: Before interviews, researchers reviewed the goals of the project and asked participants if they wished to participate and agreed to be recorded. When participants gave verbal consent, interviews were conducted. This was appropriate as participants were given information about the study ahead of the interview, which was reviewed before interviews and participants were given time to ask questions and consider if they wished to participate. Although, the Geisinger IRB determined that this project was no research, authors did consult the Geisinger IRB on the ethical conduct of the project. For surveys, the first webpage described the goals and procedures of the project for participants and participants had to give written consent.
: Tara Schmidlen is an employee and shareholder of Invitae. Emilie Simmons was an employee and shareholder of Invitae at the time the project was conducted. Amy Sturm has been a consultant for Invitae.