How to handle genetic information: A comparison of attitudes among patients and the general population

Public Health Genomics

Volumn 13, Issue 7-8, 2010, Pages 396-405

  Wolff, K ^a   Brun, W ^a   Kvale, G ^a   Ehrencrona, H ^b,d   Soller, M ^d   Nordin, K ^a,c  

^a UNIVERSITY OF BERGEN   (Norway)

^b UPPSALA UNIVERSITY   (Sweden)

^c UPPSALA UNIVERSITY   (Sweden)

^d LUND UNIVERSITY   (Sweden)

Author keywords

At risk relatives; Confidentiality; Duty to warn; Genetic information

Indexed keywords

ADULT; ARTICLE; AVOIDANCE BEHAVIOR; CONFIDENTIALITY; CONTROLLED STUDY; COPING BEHAVIOR; FAMILY; FATALITY; FEMALE; GENETIC DISORDER; HEALTH CARE PERSONNEL; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; NORWAY; PATIENT ATTITUDE; PENETRANCE; PREDICTION; PRIORITY JOURNAL; QUESTIONNAIRE; SOCIAL ATTITUDE; SWEDEN; UNCERTAINTY;

ADOLESCENT; ADULT; AGED; ATTITUDE TO HEALTH; CONFIDENTIALITY; DUTY TO WARN; FAMILY; FEMALE; GENETIC DISEASES, INBORN; GENETIC RESEARCH; HUMANS; MALE; MIDDLE AGED; NORWAY; QUESTIONNAIRES; SWEDEN; TRUTH DISCLOSURE; YOUNG ADULT;

EID: 78650203199     PISSN: 16624246     EISSN: None     Source Type: Journal    
DOI: 10.1159/000313458     Document Type: Article

References (16)

1. American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure (ASHG): Professional disclosure of familial genetic information. Am J Hum Genet 1998; 62: 474-483.
2. Wolff K, Brun W, Kvale G, Nordin K: Confidentiality versus duty to inform - An empirical study on attitudes towards the handling of genetic information. Am J Med Genet Part A 2007; 143A:142-148.
3. Decruyenaere M, Evers-Kiebooms G, Van den Berghe H: Perception of predictive testing for Huntington's disease by young women: preferring uncertainty to certainty? J Med Genet 1993; 30: 557-561.
4. Braithwaite D, Sutton S, Steggles N: Intention to participate in predictive genetic testing for hereditary cancer: the role of attitude toward uncertainty. Psychol Health 2002; 17: 761-772.
5. Pifalo V, Hollander S, Henderson CL, DeSalvo P, Gill G: The impact of consumer health information provided by libraries: the Delaware experience. Bul Med Libr Assoc 1997; 85: 16-22.
6. Case DO, Andrews JE, Johnson JD, Allard SL: Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. J Med Libr Assoc 2005; 93: 353-362.
7. Strathman A, Gleicher F, Boninger DS, Edwards CS: The consideration of future consequences: weighing immediate and distant outcomes of behavior. J Pers Soc Psychol 1994; 66: 742-752.
8. Dorr N, Krueckeberg S, Strathman A, Wood MD: Psychosocial correlates of voluntary HIV antibody testing in college students. Aids Educ Prev 1999; 11: 14-27.
9. Joseph S, Williams R, Yule W: Crisis support, attributional style, coping style and posttraumatic symptoms. Pers Indiv Differ 1992; 13: 1249-1251.
10. d'Agincourt-Canning L: Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 2001; 15: 231-247.
11. Wilson BJ, Forrest K, van Teijlingen ER, McKee L, Haites N, Matthews E, Simpson SA: Family communication about genetic risk: the little that is known. Community Genet 2004; 7: 15-24.
12. Österdahl I: Openness v Secrecy: public access to documents in Sweden and the European Union. EL Rev 1998; 23: 336-356.
13. Davis RW: Public access to community documents: a fundamental human right? EIoP 1999; 3.
14. Goodman KW: Privacy, Confidentiality, Law and Ethics. Northeast Florida Medicine Supplement 2008; 29-30.
15. Human Genetics Commission HGC: Inside Information. Balancing interests in the use of personal genetic data. Available at http:// www.hgc.gov.uk /Cl ient /document . asp?DocId=131&CAtegoryId=10. Retrieved 19.12.2008.
16. Wertz DC, Fletcher JC: Privacy and disclosure in medical genetics examined in an ethics of care. Bioethics 1991; 5: 212-232.