Table 3:

Alzheimer’s genetics Quality of Informed Consent (QUIC) Privacy and genetic items survey responses.

Question	Construct	Strongly Agree	Agree	Not sure	Disagree	Strongly Disagree	Missing	Item Score
		N (%)	N (%)	N (%)	N (%)	N (%)	N (%)	Mean (SD)
I am concerned about the privacy and confidentiality of my genetic information	P	29 (5.8)	163 (32.5)	63 (12.5)	167 (33.3)	63 (12.5)	17 (3.4)	46.08 (46.52)
Concerns about privacy would prevent me from participating in genetic research	P	8 (1.6)	25 (5.0)	91 (18.1)	229 (45.6)	136 (27.1)	13 (2.6)	16.05 (29.73)
I am okay with my genetic information being shared without my direct involvement.	G	89 (17.7)	270 (53.8)	77 (15.3)	31 (6.2)	18 (3.6)	17 (3.4)	18.04 (32.92)
I would prefer to have my genetic information “open access” to allow maximal use of my genetic information for Alzheimer’s research.	G	114 (22.7)	217 (43.2)	79 (15.7)	53 (10.6)	24 (4.8)	15 (3.0)	23.92 (37.64)
I would prefer to have my genetic information “restricted access” to allow only NIH approved researchers to use my genetic information for Alzheimer’s research.	G	45 (9.0)	153 (30.5)	67 (13.3)	179 (35.7)	41 (8.2)	17 (3.4)	47.73 (46.41)
I am okay with the researchers sharing my genetic information with “for-profit” drug companies.	G	43 (8.6)	177 (35.3)	117 (23.3)	94 (18.7)	59 (11.8)	12 (2.4)	43.16 (43.13)
I am okay with researchers making a profit from my genetic information without receiving any profits myself.	G	47 (9.4)	219 (43.6)	104 (20.7)	70 (13.9)	47 (9.4)	15 (3.0)	34.70 (41.66)
Once I provide genetic samples I would like them to be used indefinitely to maximize their utility.	G	178 (35.5)	254 (50.6)	47 (9.4)	8 (1.6)	6 (1.2)	9 (1.8)	7.61 (2.57)

Note: Bold items reflect responses that indicate concerns with privacy or use genetic information.

P = Privacy Concerns

G = Genetic Concerns