Perceptions and values regarding DNA contribution to genetic biobanks: Survey design, generation and testing

Genetic studies require unprecedented numbers of genetic material samples. Worldwide efforts currently recruit individuals to contribute DNA to sample storage for future use. The personalized medicine agenda and scientific community supports this process to resource genetic studies. These perpetual collection processes are referred to as biobanking, and the collections themselves are referred to as biobanks or biorepositories. Biobanks also draw growing support from populations living with rare diseases because this is likely the best process to make sufficient sample sizes possible. Contributing DNA without knowing future sample usage specifics raises ethical challenges to informed consent and the right to withdraw while reversing traditional review processes. This dissertation examines the perceptions of risk and benefit in DNA contribution to biobanks from potential contributors' perspectives. Specific aims of the research were to develop and test psychometric properties of a survey instrument to be used to measure relative importance of various biobank practices, risks, and benefits perceived by individuals during considerations whether to contribute DNA to a biobank for future genetic healthcare research. The survey development methods used theoretical conceptualizations of the DNA contributor to generate the items in three construct domains: risk, benefit and biobank practice variables.;Items and constructs comprising the surveys were tested for reliability, content and construct validity; measurements showing these psychometric properties of the items and their respective constructs were satisfactory. The survey responses also provided data to examine differences between contrasting groups. Item mean differences of groups with and without family history of genetic health conditions showed that in this test population there was a significant difference in the perception of importance of perceived benefits from DNA contribution, yet there was no significant difference between the groups in their perceptions of the importance of risks.;Finally, the survey responses also affirmed the proposed revisions to a conceptual framework proposed in Chapter 2. Item means showed this test population as a whole rated trust and DNA contribution benefits at an importance level that affirms several expansions of Jeffers' 2001 Stewardship conceptual model. This test population's response means measured perceived levels of importance of DNA contribution benefits at levels higher in importance than DNA contribution risks or biobank practice variables.