Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature

Genetics in Medicine

Volumn 17, Issue 8, 2015, Pages 668-678

  Otten, Ellen ^a   Plantinga, Mirjam ^a   Birnie, Erwin ^a   Verkerk, Marian A ^a   Lucassen, Anneke M ^b,c   Ranchor, Adelita V ^a   Van Langen, Irene M ^a  

^a UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

^b UNIVERSITY OF SOUTHAMPTON   (United Kingdom)

^c Wessex Clinical Genetics Service   (United Kingdom)

Author keywords

clinical genetics; duty to recontact; ethical, legal, and social (including psychological) issues; next generation technologies; professional and patient perspectives

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN; FRAGILE X MENTAL RETARDATION PROTEIN;

ARTICLE; BENEFICENCE; CLINICAL GENETICS; DUTY TO RECONTACT; ETHICS; GENETIC COUNSELING; GENETIC SCREENING; GENETIC SERVICE; HUMAN; HUNTINGTON CHOREA; INCIDENTAL FINDING; LEGAL ASPECT; PATIENT AUTONOMY; PSYCHOLOGICAL ASPECT; SOCIAL ASPECT; SYSTEMATIC REVIEW; AUSTRALIA; CANADA; EUROPEAN UNION; INDIA; ISRAEL; JURISPRUDENCE; LEGISLATION AND JURISPRUDENCE; MEDICAL ETHICS; PROCEDURES; TRENDS; UNITED STATES;

AUSTRALIA; CANADA; DUTY TO RECONTACT; ETHICS, MEDICAL; EUROPEAN UNION; GENETIC TESTING; HUMANS; INDIA; ISRAEL; JURISPRUDENCE; UNITED STATES;

EID: 84938678800     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1038/gim.2014.173     Document Type: Article

References (62)

1. Pelias MZ. Duty to disclose in medical genetics: a legal perspective. Am J Med Genet 1991; 39: 347-354
2. Andrews LB. Legal aspects of genetic information. Yale J Biol Med 1991; 64: 29-40
3. Andrews LB. Torts and the double helix: malpractice liability for failure to warn of genetic risks. Houst Law Rev 1992; 29: 149-184
4. Hecht F. Duty to disclose to family members in medical genetics. Am J Med Genet 1992; 42: 758-760
5. Pelias MZ. The duty to disclose to relatives in medical genetics-response. Am J Med Genet 1992; 42: 759-760
6. Patenaude AF. The genetic testing of children for cancer susceptibility: ethical, legal, and social issues. Behav Sci Law 1996; 14: 393-410
7. Almqvist E, Adam S, Bloch M, Fuller A, Welch P. Risk reversals in predictive testing for Huntington disease. Am J Hum Genet 1997; 61: 945-952
8. Andrews LB. The genetic information superhighway: rules of the road for contacting relatives and recontacting former patients. In: Knoppers BM (ed). Human DNA: Law and Policy: International and Comparative Perspectives? Kluwer Law International: The Hague, The Netherlands, 1997: 133-143
9. Bernard LE, McGillivray B, Van Allen MI, Friedman JM, Langlois S. Duty to re-contact: a study of families at risk for Fragile X. J Genet Couns 1999; 8: 3-15
10. Hirschhorn K, Fleisher LD, Godmilow L, et al. Duty to re-contact. Genet Med 1999; 1: 171-172; erratum 1: 186
11. Sharpe NF. The duty to recontact: benefit and harm. Am J Hum Genet 1999; 65: 1201-1204
12. Fitzpatrick JL, Hahn C, Costa T, Huggins MJ. The duty to recontact: attitudes of genetics service providers. Am J Hum Genet 1999; 64: 852-860
13. Harris R, Harris H. Knowledge about medical genetics in health care. Community Genet 1999; 2: 115-117
14. Dean JC, Fitzpatrick DR, Farndon PA, Kingstn H, Cusine D. Genetic registers in clinical practice: a survey of UK clinical genetics. J Med Genet 2000; 37: 636-640
15. Hunter AG, Sharpe N, Mullen M, Meschino WS. Ethical, legal, and practical concerns about recontacting patients to inform them of new information: the case in medical genetics. Am J Med Genet 2001; 103: 265-276
16. Knoppers BM. Editorial comment: duty to recontact: a legal harbinger? Am J Med Genet 2001; 103: 277
17. Peshkin BN, DeMarco TA, Brogan BM, Lerman C, Isaacs C. BRCA1/2 testing: complex themes in result interpretation. J Clin Oncol 2001; 19: 2555-2565
18. Godard B, Kääriäinen H, Kristoffersson U, Tranebjaerg L, Coviello D, Aymé S. Provision of genetic services in Europe: current practices and issues. Eur J Hum Genet 2003; 11(suppl 2): S13-S48
19. Wertz DC, Fletcher JC, Berg K. Review of Ethical Issues in Medical Genetics. Report of Consultants to WHO. World Health Organization, Human Genetics Programme: Geneva, Switzerland, 2003
20. Letendre M, Godard B. Expanding the physicians duty of care: a duty to recontact? Med Law 2004; 23: 531-539
21. Doheny DO, Leon de D, Raymond D. Genetic testing and counseling. In: Brin MF, Comella C, Jankovic J (eds). Dystonia: Etiology, Clinical Features and Treatment. Lippincott Williams & Wilkins: Philadelphia, PA, 2004: 23-32
22. Milunsky A, Milunsky JM. Genetic counseling: preconception, prenatal and perinatal. In: Milunsky A (ed). Genetic Disorders and the Fetus: Diagnosis, Prevention and Treatment. JHU Press: Baltimore, MD, 2004: 1-65
23. Brown KL, Moglia DM, Grumet S. Genetic counseling for breast cancer risk: general concepts, challenging themes and future directions. Breast Dis 2006; 27: 69-96
24. Guzauskas GF, Lebel RR. The duty to re-contact for newly appreciated risk factors: fragile X premutation. J Clin Ethics 2006; 17: 46-52
25. Kausmeyer DT, Lengerich EJ, Kluhsman BC, Morrone D, Harper GR, Baker MJ. A survey of patients experiences with the cancer genetic counseling process: recommendations for cancer genetics programs. J Genet Couns 2006; 15: 409-431
26. Hunter A, Sharpe NF, Mullen M, Meschino WS. Ethical, legal, and practical concerns about recontacting patients to inform them of new information: the case in medical genetics. In: Sharpe NF, Carter RF (eds). Genetic Testing: Care, Consent and Liability. Wiley: Hoboken, NJ, 2006: 415-424
27. Nagaraja SM, Jain S, Muthane UB. Perspectives towards predictive testing in Huntington disease. Neurol India 2006; 54: 359-362
28. Griffin CA, Axilbund JE, Codori AM, et al. Patient preferences regarding recontact by cancer genetics clinicians. Fam Cancer 2007; 6: 265-273
29. Peshkin BN, Burke, W. Bioethics of genetic testing for hereditary breast cancer. In: Isaacs C, Rebbeck TR (eds). Hereditary Breast Cancer. Informa Healthcare USA: New York, 2007: 35-49
30. Sexton AC, Sahhar M, Thorburn DR, Metcalfe SA. Impact of a genetic diagnosis of a mitochondrial disorder 5-17 years after the death of an affected child. J Genet Couns 2008; 17: 261-273
31. Rubinstein WS. Roles and responsibilities of a medical geneticist. Fam Cancer 2008; 7: 5-14
32. Rantanen E, Hietala M, Kristoffersson U, et al. Regulations and practices of genetic counselling in 38 European countries: the perspective of national representatives. Eur J Hum Genet 2008; 16: 1208-1216
33. Shirts BH, Parker LS. Changing interpretations, stable genes: responsibilities of patients, professionals, and policy makers in the clinical interpretation of complex genetic information. Genet Med 2008; 10: 778-783
34. Sexton AC, Metcalfe SA. Disclosing genetic research results after death of pediatric patients. JAMA 2008; 300: 1693-1695
35. Hampel H. Recontacting patients who have tested negative for BRCA1 and BRCA2 mutations: how, who and why? J Genet Couns 2009; 18: 527-529
36. Mezer E, Wygnanski-Jaffe T. Ethical issues in ocular genetics. Curr Opin Ophthalmol 2009; 20: 382-386
37. Resta RG. Unprepared, understaffed, and unplanned: thoughts on the practical implications of discovering new breast and ovarian cancer causing genes. J Genet Couns 2009; 18: 521-523
38. Ali-Khan SE, Daar AS, Shuman C, Ray PN, Scherer SW. Whole genome scanning: resolving clinical diagnosis and management amidst complex data. Pediatr Res 2009; 66: 357-363
39. Dondorp WJ, De Werth GMWR. Health Council of the Netherlands. The thousand-dollar genome: an ethical exploration. Monitoring Report Ethics and Health 2010/2. Centre for Ethics and Health: The Hague, The Netherlands, 2010
40. Elger B, Michaud K, Mangin P. When information can save lives: the duty to warn relatives about sudden cardiac death and environmental risks. Hastings Cent Rep 2010; 40: 39-45
41. Pyeritz RE. The coming explosion in genetic testing-is there a duty to recontact? N Engl J Med 2011; 365: 1367-1369
42. Sijmons RH, Van Langen IM, Sijmons JG. A clinical perspective on ethical issues in genetic testing. Account Res 2011; 18: 148-162
43. Sharp RR. Downsizing genomic medicine: approaching the ethical complexity of whole-genome sequencing by starting small. Genet Med 2011; 13: 191-194
44. Murray ML, Cerrato F, Bennett RL, Jarvik GP. Follow-up of carriers of BRCA1 and BRCA2 variants of unknown significance: variant reclassification and surgical decisions. Genet Med 2011; 13: 998-1005
45. Hastings R, de Wert G, Fowler B, et al. The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe. Eur J Hum Genet 2012; 20: 911-916
46. Trakadis YJ. Patient-controlled encrypted genomic data: an approach to advance clinical genomics. BMC Med Genomics 2012; 5: 31
47. Aronson SJ, Clark EH, Varugheese M, Baxter S, Babb LJ, Rehm HL. Communicating new knowledge on previously reported genetic variants. Genet Med 2012; 14: 713-719
48. Thorogood A, Knoppers BM, Dondorp WJ, de Wert GM. Whole-genome sequencing and the physician. Clin Genet 2012; 81: 511-513
49. Townsend A, Adam S, Birch PH, Lohn Z, Rousseau F, Friedman JM. I want to know whats in Pandoras Box: comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing. Am J Med Genet A 2012; 158A: 2519-2525
50. Van El CG, Cornel MC, Borry P, et al. Whole-genome sequencing in health care. Recommendations of the European Society of Human Genetics. Eur J Hum Genet 2013; 21: 580-584
51. Vanakker OM, De Paepe A. Pharmacogenomics in children: advantages and challenges of next generation sequencing applications. Int J Pediatr 2013; 2013: 136524
52. Reiff M, Ross K, Mulchandani S, et al. Physicians perspectives on the uncertainties and implications of chromosomal microarray testing of children and families. Clin Genet 2013; 83: 23-30
53. Bean LJ, Tinker SW, da Silva C, Hegde MR. Free the data: one laboratorys approach to knowledge-based genomic variant classification and preparation for EMR integration of genomic data. Hum Mutat 2013; 34: 1183-1188
54. Clayton EW, Haga S, Kuszler P, Bane E, Shutske K, Burke W. Managing incidental genomic findings: legal obligations of clinicians. Genet Med 2013; 15: 624-629
55. Hazin R, Brothers KB, Malin BA, et al. Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genet Med 2013; 15: 810-816
56. Quaid KA. Molecular testing: ethical and legal issues. In: Cheng L, Zhang DY, Eble JN (eds). Molecular Genetic Pathology. Springer Science and Business Media: New York, 2013: 1083-1090
57. Ayuso C, Millán JM, Mancheño M, Dal-Ré R. Informed consent for whole-genome sequencing studies in the clinical setting. Proposed recommendations on essential content and process. Eur J Hum Genet 2013; 21: 1054-1059
58. Hunt K. Individualizing the informed consent process for whole genome sequencing: a patient directed approach. Dissertation, Arizona State University: Phoenix, Arizona, 2013
59. OConnor MR. Patient and genetics health care providers attitudes regarding recontact. Thesis, University of Pittsburgh: Pittsburgh, PA, 2014
60. Semaka A, Hayden MR. Evidence-based genetic counselling implications for Huntington disease intermediate allele predictive test results. Clin Genet 2014; 85: 303-311
61. Wagner JK, Mozersky JT, Pyeritz RE. Use it or lose it as an alternative approach to protect genetic privacy in personalized medicine. Urol Oncol 2014; 32: 198-201
62. Berg D, Hirsh HL. Duty to recall. South Med J 1980; 73: 1041-3, 1045