Table 3.

Comparing Biobanking Perceptions of Individuals with Familial Risk for Hereditary Cancer with Biomedical Researchers

Domain	Individuals with familial risk for hereditary cancer	Biomedical researchers
Confidentiality and privacy	GINA laws: not known, not understood, untrustworthy, not properly implemented	GINA laws: included in consent forms, researchers unaware that participants unfamiliar with law
	Ethical concerns: privacy/confidentiality, anonymity of samples, access to samples by others, researcher profits from discoveries, use of samples in areas of research other than cancer	Perceived donor risks: lack of information protection, comprehension of consent forms, prejudice
		Researchers need guidance on how much information to provide and still retain donor's trust.
Incidental discovery	Incidental discovery: some wanted to be updated and notified if something is found in their sample that could affect themselves or their offspring, even if untreatable; others preferred never to be recontacted after donating biospecimens	Incidental discovery: participants should be notified only if clinical finding can be treated or is medically actionable
	Communicating incidental discovery: preferred to be contacted by a researcher affiliated with the study, a physician in the specialty of the disease, or a genetic counselor	Donor notification of incidental discovery: participants should be notified of incidental discovery. Logistic concerns of how to notify donors in question
Overall biospecimen research results	Interested in knowing biospecimen research results in a way that is useful and comprehendible	Believe it is important to share biospecimen research results with donors. Annual newsletter released, but difficult to tailor this newsletter to each separate, smaller study with a low number of participants
Informed consent	Participants often do not keep their consent form or remember the information	Researchers were unaware participants are unfamiliar with the biospecimen withdrawal process
	Unaware they may withdraw from study at any time; unfamiliar with withdrawal process	Depending on the type of study, blanket consent forms may be OK
		Impossible to contact donors to reconsent for each new study, especially in larger studies
	Want to be reassured verbally and receive explanations about biospecimen research in addition to the consent form	Consenting process should be critical component of curriculum

GINA, Genetic Information Nondiscrimination Act.