Maternal perspectives on the return of genetic results: Context matters

American Journal of Medical Genetics, Part A

Volumn 161, Issue 1, 2013, Pages 38-47

  Lakes, Kimberley D ^a   Vaughan, Elaine ^a   Lemke, Amy ^b   Jones, Marissa ^a   Wigal, Timothy ^a   Baker, Dean ^a   Swanson, James M ^a   Burke, Wylie ^c  

^a UNIVERSITY OF CALIFORNIA   (United States)

^b UNIVERSITY OF WASHINGTON   (United States)

^c UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE   (United States)

Author keywords

Context; Genetic; Genomic; Research participation; Return of results

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO HEALTH; CULTURAL FACTOR; EMOTIONALITY; ETHNICITY; FEMALE; GENETIC SCREENING; HUMAN; INTERPERSONAL COMMUNICATION; LABORATORY DIAGNOSIS; MATERNAL ATTITUDE; MATERNAL BEHAVIOR; MEDICAL GENETICS; MEDICAL RESEARCH; PATIENT DECISION MAKING; PRIORITY JOURNAL; QUALITY OF LIFE; RISK BENEFIT ANALYSIS; SOCIAL CLASS;

ADOLESCENT; ADULT; ASIAN AMERICANS; ASIAN CONTINENTAL ANCESTRY GROUP; CHOICE BEHAVIOR; CULTURE; FEMALE; FOCUS GROUPS; GENETIC TESTING; GENOMICS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HISPANIC AMERICANS; HUMANS; MIDDLE AGED; MOTHERS; QUESTIONNAIRES; YOUNG ADULT;

EID: 84871702554     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.35673     Document Type: Article

References (47)

1. Baker D, Ignosci J, Waffarn F, Wadhwa P, Yang H, Swanson J. 2011. The National Children's Study: Effectiveness of household-based recruitment. Epidemiology 22:S285.
2. Bandura A. 2002. Social cognitive theory in cultural context. Appl Psychol Int Rev 51:269-290.
3. Beskow LM, Burke W. 2010. Offering individual genetic research results: Context matters. Sci Transl Med 2:2-5.
4. Betancourt H, Lopez SR. 1993. The study of culture, ethnicity, and race in American psychology. Am Psychol 48:629-637.
5. Bookman BB, Langehorne AA, Eckfeldt JH, Glass KC, Jarvik GP, Klag M, Koski G, Motulsky A, Wilfond B, Manolio T, Fabsitz RR, Luepker RV, NHLBI Working Group. 2006. Reporting genetic results in research studies: Summary and recommendations of an NHLBI working group. Am J Med Genet Part A 140A:1033-1040.
6. Borry P, Evers-Kiebooms G, Cornel MC, Clarke A, Cietrickx K. 2009. Genetic testing in asymptomatic minors. Background considerations towards ESHG recommendations. Eur J Hum Genet 17:711-719.
7. Bredenoord AL, Charlotte Onland-Moret C, Johannes JM, Van Delden JJM. 2011. Feedback of individual genetic results to research participants: In favor of qualified disclosure policy. Hum Mutat 32:861-867.
8. Burke W, Diekema DS. 2006. Ethical issues arising from the participation of children in genetic research. J Pediatr 149:S34-S38.
9. Cameron LD, Sherman KA, Marteau TM, Brown PM. 2009. Impact of genetic risk information and type of disease on perceived risk, anticipated affect, and expected consequences of genetic tests. Health Psychol 28:307-316.
10. Caufield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, Diaz CM, Fryer-Edwards K, Green SK, Hodosh MA, Juengst ET, Kaye J, Kedes L, Knoppers BM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray PN, Sugarman J, Timmons M. 2008. Research ethics recommendations for whole-genome research: Consensus statement. PLOS Biol 6:430-435.
11. Crabtree BF, Miller WL. 1999. Using codes and code manuals: A template organizing style of interpretation. In: Crabtree BF, Miller WL, editors. Doing qualitative research, 2nd edition. Thousand Oaks, CA: Sage. pp 163-178.
12. Fabitz RR, McGuire A, Sharp R, Puggal M, Beskow LM, Biesecker LG, Bookman E, Burke W, Gonzalez Burchard E, Church G, Clayton EW, Eckfeldt JH, Fernandez CV, Fisher R, Fullerton SM, Gabriel S, Gachupin F, James C, Jarvik GP, Kittles R, Leib JR, O'Donnel C, O'Rourke PP, Rodriguez LL, Schully SD, Shuldiner AR, Sze RK, Thakuria JV, Wolf SM, Burke GL. 2010. Ethical and practical guidelines for reporting genetic research results to study participants. Circ Cardiovasc Genet 3:574-580.
13. Fang CY, Daly MB, Miller SM, Zerr T, Malick J, Engstrom P. 2006. Coping with ovarian cancer risk: The moderating effects of perceived control on coping and adjustment. Br J Health Psychol 11:561-580.
14. Fernandez CV, Kodish E, Weijer C. 2003. Informing study participants of research results: An ethical imperative. IRB 25:12-19.
15. Forsberg JS, Hansson MG, Eriksson S. 2009. Changing perspectives in biobank research: From individual rights to concerns about public health regarding the return of results. Eur J Hum Genet 17:1544-1549.
16. Foster MW, Mulvihill JJ, Sharp RR. 2009. Evaluating the utility of personal genomic information. Genet Med 11:570-574.
17. Gonzaga-Jauregui C, Lupski JR, Gibbs RA. 2012. Human genome sequencing in health and disease. Annu Rev Med 63:35-61.
18. Green ED, Guyer MS, National Human Genome Research Institute. 2011. Charting a course for genomic medicine from base pairs to bedside. Nature 470:204-217.
19. Gritz ER, Peterson SK, Vernon SW, Mirani SK, Baile WF, Watts BG, Amos CI, Frazier ML, Lynch P. 2005. Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 23:1902-1910.
20. Hebebrand J, Scherag R, Schimmelmann BG, Hinney A. 2010. Child and adolescent psychiatric genetics. Eur Child Adolesc Psychiatry 19:259-279.
21. Hens K, Nys H, Cassiman K, Dietrickx K. 2011. The return of individual research findings in pediatric genetic research. J Med Ethics 37:179-183.
22. Johnson E, Weber EU. 2009. Mindful judgment and decision-making. Annu Rev Psychol 60:53-85.
23. King N. 1998. Template analysis. In: Symon G, Cassel C, editors. Qualitative methods and analysis in organizational research: A practical guide. Thousand Oaks, CA: Sage. pp 118-134.
24. Kinsinger SW, McGregor BA, Bowen DJ. 2009. Perceived breast cancer risk, social support, and distress among a community-based sample of women. J Psychosoc Oncol 27:230-247.
25. Kohane IS, Taylor PL. 2010. Multidimensional results reporting to participants in genomic studies: Getting it right. Sci Transl Med 2:19-23.
26. Lakes KD, Vaughan E, Jones M, Burke W, Baker D, Swanson J. 2012. Diverse perceptions of the informed consent process: Results from formative research for the National Children's Study. Am J Community Psychol 49:215-232.
27. LaKind JS, Aylward LL, Brunk C, Dizio S, et al. 2008. Guidelines for the communication of Biomonitoring equivalents: Report from the Biomonitoring Equivalents Experts Workshop. Regul Toxicol Pharmacol 51:S16-S26.
28. Landrine H, Klonoff EA. 1992. Culture and health-related schemas: A review and proposal for interdisciplinary integration. Health Psychol 11:267-276.
29. Lemke AA, Halverson C, Ross LF. 2011. Biobank participation and returning research results: Perspectives from a deliberative engagement in South Side Chicago. Am J Med Genet Part A 158A:1029-1037.
30. Lipinski SE, Lipinski MJ, Biesecker LG, Biesecker BB. 2006. Uncertainty and perceived personal control among parents of children with rare chromosome conditions: The role of genetic counseling. Am J Med Genet Part C 142C:232-240.
31. McGuire AL, Lupski JR. 2010. Personal genome research: What should the participant be told? Trends Genet 26:199-201.
32. McGuire AL, Caufield T, Cho MK. 2008. Research ethics and the challenge of whole genome sequencing. Nat Rev Genet 9:152-156.
33. Montaquila JM, Brick JM, Curtin LR. 2010. Statistical and practical issues in the design of a national probability sample of births for the Vanguard Study of the National Children's Study. Stat Med 29:1368-1376.
34. National Academy of Sciences. 2006. Human biomonitoring for environmental chemicals, Chapter 6. Washington, DC: National Academy Press.
35. National Institutes of Health [Internet]. 1993. Protecting human research subjects: 199 Institutional Review Board guidebook: Human genetic research. Office for Protection from Research Risks. Available from: http://www.genome.gov/10001752
36. O'Daniel J, Haga SB. 2011. Public perspectives on returning genetics and genomics research results. Pub Health Genomics 14:346-355.
37. Pociot F, Akolkar B, Concannon P, Erlich HA, Morahan G, Nierras CR, Todd JA, Rich SS, Nerup J. 2010. Genetics of type 1 diabetes: What's next? Diabetes 59:1561-1571.
38. Powell M, Dunwoody S, Griffin RJ, Neuwirth K, 2007. Exploring lay uncertainty about an environmental risk. Public Underst Sci 16:323-343.
39. Ravitsky V, Wilfond BS. 2006. Disclosing individual genetic results to research participants. Am J Bioeth 6:8-17.
40. Samuel J, Ries N, Malkin D, Knoppers B. 2008. Biobanks and longitudinal studies: Where are the children? GenEdit 6:1-8.
41. Senior V, Weinman J, Marteau TM. 2002. The influence of perceived control over causes and responses to health threats: A vignette study. Br J Health Psychol 7:203-211.
42. Schulze TG. 2010. Genetic research into bipolar disorder: The need for a research framework that integrates sophisticated molecular biology and clinically informed phenotype characterization. Psychiatr Clin North Am 33:67-82.
43. Slovic P, Finucane ML, Peters E, MacGregor DG. 2004. Risk as analysis and risk as feelings: Some thoughts about affect, reason, risk and rationality. Risk Anal 24:311-322.
44. Tabor H, Yu J, Civan A, Crouch J, Kuwana E, McMillin M, Stock J, Dent K, Anderson N, Lakes KD, Specker B, Burke W, Murray J, Swanson JM, Bamshad M. 2011. "My46, " an innovative web-based tool for management of results return from exome and whole genome sequencing studies. Presented at the National Children's Study Research Day at the National Institutes of Health, Bethesda, Maryland.
45. Vaughan E, Dunton G. 2007. Difficult socio-economic circumstances and the utilization of risk information. Health Risk Soc 9:323-341.
46. Wilfond B, Ross LF. 2009. From genetics to genomics: Ethics, policy, and parental decision making. J Pediatr Psychol 34:639-647.
47. Wolf SM, Lawrenz FP, Nelson CA, Kahn JP, Cho ML, Clayton EW, Fletcher JG, Georgieff MK, Hammerschmidt D, Hudson K, Illes J, Kapur V, Keane MA, Koenig BA, Leroy BS, McFarland EG, Paradise J, Parker LS, Terry SF, Van Ness B, Wilfond BS. 2008. Managing incidental findings in human subject's research: Analysis and recommendations. J Law Med Ethics 36:219-248.