id	author	title	date	pages	extension	mime	words	sentence	flesch	summary	cache	txt
ihlr-25052	Field, Robert I.; Orlando, Anthony W.; Rosoff, Arnold J.	Am I My Cousin's Keeper? A Proposal to Protect Relatives of Genetic Database Subjects	2021	55	.pdf	application/pdf	25798	1373	52	They permit use of potentially identifiable information, such as biospecimens and individual-level genomic data, but only subject to specified safeguards against unauthorized disclosure.277 However, there are exceptions to the safeguards when disclosure is required by federal, state, or local laws, is necessary for medical treatment, is authorized by an IRB, or is consented to by the patient.278 Studies have shown that the rigor of IRB oversight of genetic database research varies considerably.279 For example, IRB members differ widely in their characterization of the ethical implications of genetic data and of the risk of subjects being identified.280 This inconsistency suggests variability in the extent to which IRB members understand the nature of genetic databases and the threats they can present to subject privacy.281 While such variability is not limited to comprehension of genetic information,282 the complexity of genetic research coupled with its relative novelty may exacerbate gaps among IRB members in understanding this kind of information. Thus, they are a good foundation to work from in fashioning protections for genetic data privacy.	cache/ihlr-25052.pdf	txt/ihlr-25052.txt