What are the limits of the duty of care? The case of clinical genetics

Personalized Medicine

Volumn 5, Issue 2, 2008, Pages 101-104

  Borry, Pascal ^a   Dierickx, Kris ^a  

^a UNIVERSITY OF LEUVEN   (Belgium)

Author keywords

[No Author keywords available]

Indexed keywords

CHILD PARENT RELATION; CLINICAL GENETICS; DOCTOR PATIENT RELATION; EDITORIAL; GENE MUTATION; GENETIC DISORDER; GENETIC RISK; GENETIC SUSCEPTIBILITY; HETEROZYGOTE DETECTION; HUMAN; INHERITANCE; INTERPERSONAL COMMUNICATION; NEWBORN SCREENING; NUCLEOTIDE SEQUENCE; ONCOGENE; PARENTAL ATTITUDE; PATIENT ATTITUDE; PHYSICIAN ATTITUDE; PRIORITY JOURNAL;

EID: 42549116241     PISSN: 17410541     EISSN: 1744828X     Source Type: Journal    
DOI: 10.2217/17410541.5.2.101     Document Type: Editorial

References (37)

1. Clarke A, Richards M, Kerzin-Storrar L et al.: Genetic professionals' reports of nondisclosure of genetic risk information within families. Eur. J. Hum. Genet. 13(5), 556-562 (2005).
2. Loud JT, Weissman NE, Peters JA et al.: Deliberate deceit of family members: a challenge to providers of clinical genetics services. J. Clin. Oncol. 24(10), 1643-1646 (2006).
3. Green NS, Dolan SM, Murray TH: Newborn screening: complexities in universal genetic testing. Am. J. Public Health 96(11), 1955-1959 (2006).
4. UK Newborn Screening Programme Centre: Newborn Blood Spot Screening in the UK. Policies and Standards. Newborn Screening Programme Centre, London, UK (2005).
5. Health Resources and Services Administration: Newborn Screening: Toward a Uniform Screening Panel and System. Health Resources and Services Administration, MD, USA (2005).
6. Fanos JH: Developmental tasks of childhood and adolescence: implications for genetic testing. Am. J. Med. Genet. 71(1), 22-28 (1997).
7. Denayer L, Welkenhuysen M, Evers-Klebooms G, Cassiman JJ, van den Berghe H: Risk perception after CF carrier testing and impact of the test result on reproductive decision making. Am. J. Med. Genet. 69(4), 422-428 (1997).
8. Fanos JH, Johnson JP: Perception of carrier status by cystic fibrosis siblings. Am. J. Hum. Genet. 57(2), 431-438 (1995).
9. Denayer L, de Boeck K, Evers-Kiebooms G, van den Berghe H: The transfer of information about genetic transmission to brothers and sisters of parents with a CF-child. Birth Defects Orig. Artic. Ser. 28(1), 149-158 (1992).
10. Axworthy D, Brock DJ, Bobrow M, Marteau TM: Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up. UK Cystic Fibrosis Follow-Up Study Group. Lancet 347(9013), 1443-1446 (1996).
11. Bekker H, Modell M, Denniss G et al.: Uptake of cystic fibrosis testing in primary care: supply push or demand pull? BMJ 306(6892), 1584-1586 (1993).
12. Bekker H, Denniss G, Modell M, Bobrow M, Marteau T: The impact of population based screening for carriers of cystic fibrosis. J. Med. Genet. 31(5), 364-368 (1994).
13. Watson EK, Mayall E, Chapple J et al.: Screening for carriers of cystic fibrosis through primary health care services. BMJ 303(6801), 504-507 (1991).
14. Mennie ME, Gilfillan A, Compton M et al.: Prenatal screening for cystic fibrosis. Lancet 340(8813), 214-216 (1992).
15. Callanan NP, Cheuvront BJ, Sorenson JR: CF carrier testing in a high risk population: anxiety, risk perceptions, and reproductive plans of carrier by "non-carrier" couples. Genet. Med. 1(7), 323-327 (1999).
16. Marteau TM, Michie S, Miedzybrodzka ZH, Allanson A: Incorrect recall of residual risk three years after carrier screening for cystic fibrosis: a comparison of two-step and couple screening. Am. J. Obstet. Gynecol. 181(1), 165-169 (1999).
17. Fanos JH, Mackintosh MA: Never again joy without sorrow: the effect on parents of a child with ataxia-telangiectasia. Am. J. Med. Genet. 87(5), 413-419 (1999).
18. Fanos JH, Nickerson BG: Long-term effects of sibling death during adolescence. J. Adolesc. Res. 6, 70-82 (1991).
19. Mischler EH, Wilfond BS, Fost N et al.: Cystic fibrosis newborn screening: impact on reproductive behavior and implications for genetic counseling. Pediatrics 102(1), 44-52 (1998).
20. Ciske DJ, Haavisto A, Laxova A, Rock LZ, Farrell PM: Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process. Pediatrics 107(4), 699-705 (2001).
21. Forrest K, Simpson SA, Wilson BJ et al.: To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin. Genet. 64(4), 317-326 (2003).
22. Varekamp I, Suurmeijer TP, Brocker-Vriends AH et al.: Carrier testing and prenatal diagnosis for hemophilia: experiences and attitudes of 549 potential and obligate carriers. Am. J. Med. Genet. 37(1), 147-154 (1990).
23. Varekamp I, Suurmeijer T, Brocker-Vriends A, Rosendaal FR: Hemophilia and the use of genetic counseling and carrier testing within family networks. Birth Defects Orig. Artic. Ser. 28(1), 139-148 (1992).
24. Varekamp I, Suurmeijer TP, Rosendaal FR, Brocker-Vriends AH: The use of preventive health care services: carrier testing for the genetic disorder haemophilia. Soc. Sci. Med. 37(5), 639-648 (1993).
25. Sorenson JR, Jennings-Grant T, Newman J: Communication about carrier testing within hemophilia A families. Am. J. Med. Genet. 119C(1), 3-10 (2003).
26. Fanos JH, Johnson JP: Barriers to carrier testing for adult cystic fibrosis sibs: the importance of not knowing. Am. J. Med. Genet. 59(1), 85-91 (1995).
27. Duster T: The social consequences of genetic disclosure. In: Behavioral Genetics. The Clash of Culture and Biology. Carson RA, Rothstein MA (Eds). Johns Hopkins University Press, London, UK, 172-188 (1999).
28. Sharpe NF: The duty to recontact: benefit and harm. Am. J. Hum. Genet. 65(4), 1201-1204 (1999).
29. Borry P, Schotsmans P, Fryns JP, Dierickx K: Carrier testing in minors: a systematic review of guidelines and positions statements. Eur. J. Hum. Genet. 14(2), 133-138 (2006).
30. Sharpe NF: Psychological aspects of genetic counseling: a legal perspective. Am. J. Med. Genet. 50(3), 234-238 (1994).
31. Offit K, Groeger E, Turner S, Wadsworth EA, Weiser MA: The "duty to warn" a patient's family members about hereditary disease risks. JAMA 292(12), 1469-1473 (2004).
32. Fitzpatrick JL, Hahn C, Costa T, Huggins MJ: The duty to recontact: attitudes of genetics service providers. Am. J. Hum. Genet. 64(3), 852-860 (1999).
33. Borry P, Goffin T, Nys H, Dierickx K: Attitudes regarding carrier testing in incompetent children. A survey of European clinical geneticists. Eur. J. Hum. Genet. 15(12), 1211-1217 (2007).
34. Borry P, Stultiens L, Goffin T, Nys H, Dierickx K: Minors and informed consent in carrier testing. J. Med. Ethics (2007) (In Press).
35. Borry P, Goffin T, Nys H, Dierickx K: Attitudes regarding predictive genetic testing in minors, a survey of European clinical geneticists. Am. J. Med. Genet. C Semin. Med. Genet. 148C(1), 78-83 (2008).
36. Dugan RB, Wiesner GL, Juengst ET, O'Riordan M, Matthews AL, Robin NH: Duty to warn at-risk relatives for genetic disease: genetic counselors' clinical experience. Am. J. Med. Genet. C Semin. Med. Genet. 119(1), 27-34 (2003).
37. Daly MB, Barsevick A, Miller SM et al.: Communicating genetic test results to the family: a six-step, skills-building strategy. Fam. Community Health 24(3), 13-26 (2001).