The public's attitudes towards the use of genetic information for medical purposes and its related factors in Japan

Community Genetics

Volumn 11, Issue 1, 2008, Pages 18-25

  Ikeda, Wakaha ^a  

^a JUNTENDO UNIVERSITY SCHOOL OF MEDICINE   (Japan)

Author keywords

Discriminant analysis; Genetic information; Japan; Public attitudes

Indexed keywords

ADULT; AGED; ARTICLE; CONTROLLED STUDY; DISCRIMINANT ANALYSIS; FEMALE; HUMAN; JAPAN; MALE; MEDICAL EDUCATION; MEDICAL GENETICS; MEDICAL RESEARCH; PRIORITY JOURNAL; QUESTIONNAIRE; RANDOM SAMPLE; STUDENT T TEST;

ADULT; AGED; ATTITUDE; ATTITUDE TO HEALTH; FEMALE; GENETIC PRIVACY; GENETIC RESEARCH; GENETIC SCREENING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; JAPAN; MALE; MIDDLE AGED; PREJUDICE; PUBLIC OPINION; QUESTIONNAIRES;

EID: 38349036385     PISSN: 14222795     EISSN: None     Source Type: Journal    
DOI: 10.1159/000111636     Document Type: Article

References (45)

1. Bruno JS: Who cares about the double helix? Nature 2003;422:803-804.
2. International Human Genome Sequencing Consortium: Initial sequencing and analysis of the human genome. Nature 2001;409:860-921.
3. The International HapMap Consortium: The International HapMap Project. Nature 2003;426:789-796.
4. International Human Genome Sequencing Consortium: Finishing the euchromatic sequence of the human genome. Nature 2004;431:931-945.
5. Van Ommen GJ: The Human Genome Project and the future of diagnostics, treatment and prevention. J Inherit Metab Dis 2002;3:183-188.
6. Moore CA, Khoury MJ, Bradley LA: From genetics to genomics: using gene-based medicine to prevent disease and promote health in children. Semin Perinatol 2005;3:135-143.
7. Masui T: Infrastructure of the use of personal information is indispensable for current genome research (in Japanese). Med Tribune 2003;2:74.
8. Masui T, Takada Y: Ethical, legal, and social issues of research - New phase of genome research desperately requires social understanding and safeguards on the use of medical records and other personal information (in Japanese with English abstract). Yakugaku Zasshi 2003;123:107-119.
9. Masui T: A meaning of UK Biobank project (in Japanese). Jurist 2003;1247:29-36.
10. Davis DS: Discovery of children's carrier status for recessive genetic disease: some ethical issues. Genet Test 1998;2:323-327.
11. Wertz DC, Fanos JH, Reilly PR: Genetic testing for children and adolescents. Who decided? JAMA 1994;272:875-881.
12. Lynch EL, Doherty RJ, Gaff CL, Macrae FA, Lindeman GJ: 'Cancer in the family' and genetic testing: implications for life insurance. Med J Aust 2003;179:480-483.
13. Joly Y, Knopper BM, Godard B: Genetic information and insurance: a 'real' risk? Eur J Hum Genet 2003;11:561-564.
14. Collins FS, McKusick VA: Implications of the Human Genome Project for medical science. JAMA 2001;285:540-544.
15. Olick RS: Disclosing genetic information to family members: do old paradigms fit the new medicine? N J Med 2000;97:43-46.
16. Everett M: Can you keep a (genetic) secret? The genetic privacy movement. J Genet Couns 2004;13:273-291.
17. Mould A: Implications of genetic testing: discrimination in life insurance and future directions. J Law Med 2003;10:470-487.
18. Knudsen LE: Global gene mining and the pharmaceutical industry. Toxicol Appl Pharmacol 2005;207(suppl):679-683.
19. Rabino I: Genetic testing and its implications: human genetics researchers grapple with ethical issues. Sci Technol Human Values 2003;28:365-402.
20. Wertz DC, Fletcher JC, Nippert I, Wolff G, Ayme S: In focus: has patient autonomy gone too far? Geneticists' views in 36 nations. Am J Bioeth 2002;2:W21.
21. Nomura S, Kawai S, Fukushima T, Katoh H, Osawa G: The attitude of Japanese physicians regarding genetic service for autosomal dominant polycystic kidney disease (ADPKC). Jpn J Hum Genet 1994;39:427-431.
22. Lapham EV, Kozma C, Weiss JO: Genetic discrimination: perspectives of consumers. Science 1996;274:621-624.
23. Low L, Kings S, Wilkie T: Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom. BMJ 1998;317:1632-1635.
24. Armstrong K, Weber B, FitzGerald G, Hershey JC, Pauly MV, Lemaire J, Subramanian K, Asch DA: Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. Am J Med Genet A 2003;120:359-364.
25. Kass NE, Hull SC, Natowicz MR, Faden RR, Planting L, Gostin LO, Slutsman J: Medical privacy and the disclosure of personal medical information: the beliefs and experiences of those with genetic and other clinical conditions. Am J Med Genet A 2004;128:261-270.
26. Johnson S, Kass NE, Natowicz M: Disclosure of personal medical information: differences among parents and affected adults for genetic and non-genetic conditions. Genet Test 2005;9:269-280.
27. Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N: Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health 2004;32:224-229.
28. Kettis-Lindblad A, Ring L, Viberth E, Hansson MG: Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? Eur J Public Health 2006;16:433-440.
29. The University of Tokyo College of Arts and Science: Statistics of the Humanities and Social Sciences (in Japanese). Tokyo, University of Tokyo Publication Association, 1994, pp 9-10.
30. Huston P, Rowan M: Qualitative studies. Their role in medical research. Can Fam Physician 1998;44:2453-2458.
31. Henneman L, Timmermans DR, Van der Wal G: Public experiences, knowledge and expectations about medical genetics and the use of genetic information. Community Genet 2004;7:33-43.
32. Catz DC, Green NS, Tobin JN, Lloyd-Puryear MA, Kyler P, Umemoto A, Cernoch J, Brown R, Wolman F: Attitudes about genetics in underserved, culturally diverse populations. Community Genet 2005;8:161-172.
33. Ikeda W, Fujita H: Public awareness of genetic testing for hereditary cancer susceptibility and its related factors (in Japanese with English abstract). Jpn J Health Hum Ecol 2003;69:1-12.
34. Roberts LW, Geppert CM, Warner TD, Green Hammond KA, Rogers M, Smrcka J, Roberts BB: Perspectives on use and protection of genetic information in work settings: results of a preliminary study. Soc Sci Med 2005;60:1855-1858.
35. Muto K: Attitudes toward pre-symptomatic testing and social services for families with Huntington's disease in Japan (in Japanese with English abstract). Med Soc 1998;8:67-82.
36. Chattopadhyay A: Understanding of genetic information in higher secondary students in northeast India and the implications for genetics education. Cell Biol Educ 2005;4:97-104.
37. Takebe H: Genome education for doctors and medical staffs (in Japanese). Iden 2003;57:64-68.
38. Kawashima H: Difference of ethical issues between Japan and USA in genetic medical treatment; in Fujiki N, Meisar D (eds): Human Genome Research and Society (in Japanese). Ibaraki, Eubios Ethics Institute, 1992, pp 152-154.
39. Rose A, Peters N, Shea JA, Armstrong K: The association between knowledge and attitudes about genetic testing for cancer risk in the United States. J Health Commun 2005;10:309-321.
40. Knoppers BM, Hirtle M, Lormeau S: Ethical issues in international collaborative research on the human genome: the HGP and HGDP. Genomics 1996;34:272-282.
41. Lone DL: Whose genes are they? The Human Genome Diversity Project. J Health Soc Policy 1999;10:51-66.
42. China: Presidential Decree No. 33 of 27 October 1994 promulgating the Law of the People's Republic of China on the protection of maternal and child health. Int Dig Health Legis 1995;46:39-42.
43. Scotson J: Eugenics in China. Lancet 1995;346:509.
44. Takebe H: Bioethics in human gene analysis (in Japanese). J Jpn Assoc Bioethics 2000;11:11-15.
45. Munn M, Skinner PO, Conn L, Horsma HG, Gregory P: The involvement of genome researchers in high school science education. Genome Res 1999;9:597-607.