Research biobank participants attitudes towards genetic exceptionalism and health record confidentiality

Belbin GM, Odgis J, Sorokin EP et al (2017) Genetic identification of a common collagen disease in puerto ricans via identity-by-descent mapping in a health system. Elife 12(6):e25060. https://doi.org/10.7554/eLife.25060

Article  Google Scholar 

Billings PR, Kohn MA, de Cuevas M, Beckwith J, Alper JS, Natowicz MR (1992) Discrimination as a consequence of genetic testing. Am J Hum Genet 50(3):476–482

CAS  PubMed  PubMed Central  Google Scholar 

Biome Biobank Program: Icahn School of Medicine at Mount Sinai (n.d.) Retrieved April 9, 2022, from https://icahn.mssm.edu/research/ipm/programs/biome-biobank

Biome Biobank Program: Icahn School of Medicine at Mount Sinai (n.d.) Retrieved September 23, 2023, from https://icahn.mssm.edu/research/ipm/programs/biome-biobank/facts

Boardman F, Hale R (2018) Responsibility, identity, and genomic sequencing: A comparison of published recommendations and patient perspectives on accepting or declining incidental findings. Mol Genet Genomic Med 6(6):1079–1096. https://doi.org/10.1002/mgg3.485

Article  PubMed  PubMed Central  Google Scholar 

Clayton EW, Halverson CM, Sathe NA, Malin BA (2018) A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States. PLoS One 13(10):e0204417. https://doi.org/10.1371/journal.pone.0204417

Article  CAS  PubMed  PubMed Central  Google Scholar 

Clayton EW, Hannig VL, Pfotenhauer JP, Parker RA, Campbell PW 3rd, Phillips JA 3rd (1996) Lack of interest by nonpregnant couples in population-based cystic fibrosis carrier screening. Am J Hum Genet 58(3):617–627

CAS  PubMed  PubMed Central  Google Scholar 

Corker E, Hamilton S, Robinson E et al (2016) Viewpoint survey of mental health service users’ experiences of discrimination in England 2008–2014. Acta Psychiatr Scand 134 Suppl 446(Suppl Suppl 446):6–13. https://doi.org/10.1111/acps.12610

Article  CAS  PubMed  Google Scholar 

Diergaarde B, Bowen DJ, Ludman EJ, Culver JO, Press N, Burke W (2007) Genetic information: Special or not? Responses from focus groups with members of a health maintenance organization. Am J Med Genet A 143A(6):564–569. https://doi.org/10.1002/ajmg.a.31621

Article  PubMed  Google Scholar 

Downing NR, Williams JK, Daack-Hirsch S, Driessnack M, Simon CM (2013) Genetics specialists’ perspectives on disclosure of genomic incidental findings in the clinical setting. Patient Educ Couns 90(1):133–138. https://doi.org/10.1016/j.pec.2012.09.010

Article  PubMed  Google Scholar 

Guttmacher AE, Collins FS, Carmona RH (2004) The family history–more important than ever. N Engl J Med 351(22):2333–2336. https://doi.org/10.1056/NEJMsb042979

Article  CAS  PubMed  Google Scholar 

Harris TM, Parrott R, Dorgan KA (2004) Talking about human genetics within religious frameworks. Health Commun 16(1):105–116. https://doi.org/10.1207/S15327027HC1601_7

Article  PubMed  Google Scholar 

Huggett C, Birtel MD, Awenat YF et al (2018) A qualitative study: experiences of stigma by people with mental health problems. Psychol Psychother 91(3):380–397. https://doi.org/10.1111/papt.12167

Article  PubMed  Google Scholar 

Joffe S, Sellers DE, Ekunwe L et al (2019) Preferences for return of genetic results among participants in the Jackson heart study and Framingham heart study. Circ Genom Precis Med 12(12):e002632. https://doi.org/10.1161/CIRCGEN.119.002632

Article  PubMed  PubMed Central  Google Scholar 

Kleiderman E, Avard D, Besso A, Ali-Khan S, Sauvageau G, Hébert J (2015) Disclosure of incidental findings in cancer genomic research: investigators’ perceptions on obligations and barriers. Clin Genet 88(4):320–326. https://doi.org/10.1111/cge.12540

Article  CAS  PubMed  Google Scholar 

Knoppers BM, Beauvais MJS (2021) Three decades of genetic privacy: a metaphoric journey. Hum Mol Genet 30(R2):R156–R160. https://doi.org/10.1093/hmg/ddab164

Article  CAS  PubMed  PubMed Central  Google Scholar 

Lenk C, Duttge G, Flatau L et al (2019) A look into the future? Patients’ and health care staff’s perception and evaluation of genetic information and the right not to know. Am J Med Genet B Neuropsychiatr Genet 180(8):576–588. https://doi.org/10.1002/ajmg.b.32751

Article  PubMed  Google Scholar 

McGuire AL, Fisher R, Cusenza P et al (2008) Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider. Genet Med 10(7):495–499. https://doi.org/10.1097/gim.0b013e31817a8aaa

Article  PubMed  Google Scholar 

Middleton A, Milne R, Howard H et al (2020) Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data. Eur J Hum Genet 28(4):424–434. https://doi.org/10.1038/s41431-019-0550-y

Article  PubMed  Google Scholar 

Middleton A, Milne R, Thorogood A, Kleiderman E, Niemiec E, Prainsack B, Farley L, Bevan P, Steed C, Smith J, Vears D, Atutornu J, Howard HC, Morley KI (2019) Attitudes of publics who are unwilling to donate DNA data for research. Eur J Med Genet 62(5):316–323. https://doi.org/10.1016/j.ejmg.2018.11.014

Article  PubMed  PubMed Central  Google Scholar 

Middleton A, Morley KI, Bragin E et al (2016) Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research. Eur J Hum Genet 24(1):21–29. https://doi.org/10.1038/ejhg.2015.58

Article  PubMed  Google Scholar 

Ortega-Paredes D, Larrea-Álvarez C, Herrera M, Fernandez-Moreira E, Larrea-Álvarez M (2019) Assessing knowledge of genetics in undergraduate students in Quito, Ecuador. F1000Res 8:290. https://doi.org/10.12688/f1000research.18394.2

Article  PubMed  PubMed Central  Google Scholar 

Otlowski M, Taylor S, Bombard Y (2012) Genetic discrimination: international perspectives. Ann Rev Genom Human Genet 13:433–454. https://doi.org/10.1146/annurev-genom-090711-163800

Article  CAS  Google Scholar 

Pyeritz RE (2012) The family history: the first genetic test, and still useful after all those years? Genet Med 14(1):3–9. https://doi.org/10.1038/gim.0b013e3182310bcf

Article  PubMed  Google Scholar 

Ruiz-Canela M, Valle-Mansilla JI, Sulmasy DP (2011) What research participants want to know about genetic research results: the impact of “genetic exceptionalism.” J Empir Res Hum Res Ethics 6(3):39–46. https://doi.org/10.1525/jer.2011.6.3.39

Article  PubMed  Google Scholar 

Schwartz MD, Hughes C, Roth J et al (2000) Spiritual faith and genetic testing decisions among high-risk breast cancer probands. Cancer Epidemiol Biomarkers Prev 9(4):381–385

CAS  PubMed  Google Scholar 

Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W (2010) Genomic research and wide data sharing: views of prospective participants. Genet Med 12(8):486–495. https://doi.org/10.1097/GIM.0b013e3181e38f9e

Article  PubMed  PubMed Central  Google Scholar 

Voigt TH, Holtz V, Niemiec E, Howard HC, Middleton A, Prainsack B (2020) Willingness to donate genomic and other medical data: results from Germany. Eur J Hum Genet 28(8):1000–1009. https://doi.org/10.1038/s41431-020-0611-2

Article  PubMed  PubMed Central  Google Scholar 

Williams JK, Erwin C, Juhl AR et al (2010) In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study. Am J Med Genet B Neuropsychiatr Genet 153B(6):1150–1159. https://doi.org/10.1002/ajmg.b.31080

Article  PubMed  PubMed Central  Google Scholar 

Zeid N (2016) Participant perspectives on return of genetic research results in an ethnically diverse biobank. (Publication No. 10099218) [Master's thesis, Icahn School of Medicine at Mount Sinai]. ProQuest Dissertations and Theses Global

Comments (0)

No login
gif