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ORIGINAL SCIENTIFIC PAPERSquaLitative researchroute to prophylaxis, although the optimal doseand treatment duration is unknown, there areside effects, 35,36 and concerns efficacy may becompromised by the tumour’s hormonal status. 9However, chemoprevention was not reported bythe women to have been considered. The NewZealand Guidelines Group recommends all suchoptions be discussed with very high risk womeni.e. BRCA1 and 2 mutation carriers. 8Even so, how adequately these prophylactic optionsmight be conveyed to patients is a mootpoint given the incorrect understandings thesewomen already exhibited regarding the purposeof screening. Similar problems of interpretationarose over the significance of test results andgenetic counselling. Women with a confirmedmutation, for instance, indicated that it wasdifficult to comprehend the possibility of a genemutation being present yet not expressed. Becauseprophylaxis only reduces risks for the individual,some women in this study were considering thepossibility of either forgoing childbearing or usingegg donors to remove the risk of the mutationbeing passed on to their children. These intentionshighlight the concerns raised in themes 3,6 and 7. Increasingly, in vitro fertilisation clinicsoffer preimplantation embryo testing for BRCAmutations and are discarding carrier embryos becauseof their associated predisposition for diseaserisk. 34 Such contemporary clinical practices (in thecontext of the declining BRCA1 and 2 risk estimates)convey the same thread of genetic fatalism(theme 3) that the women reported of themselves.Uncoupling risk from personal destiny and a mutationfrom its full expression would appear thento be a conceptual task required on both sides ofthe consultation desk.In conclusion, these results, while not representativeof the whole population, are still interestingas they provide an alternative to the predominantmedical view of the usefulness of geneticknowledge to individual patients. The fatalisticemotional and intuitive experience of genetic riskwhich these women described as ‘going-to-havecancerness’coupled with the sense of failure ofexpected support from the health care systemcreated a negative experience of anxiety, futilityand guilt. In light of the downward numericalmovement of risk calculations, this createsa moral imperative for health care providersto provide frank discussions of this currentlyconfusing state of risk assessment and also todiscover a means of keeping in touch with clientsto update them of changes in their risk status.Careful enquiry into how people make sense oftheir risk status as time progresses is also needed.While a role exists for GPs in ongoing educationand support of these women, as previously noted,this support needs to be factually correct, toavoid genetic fatalism, and (given these women’sexperiences) to be critically informed as to thebenefits of not testing. Finally, the study suggeststhe value of a wider and systematic enquiryinto the experiences of living with high personalor familial risk of BRCA1 and 2 mutations. Insuch a study, the views of medical practitionerson the management of such cases (e.g. referralsbetween primary, secondary and tertiary serviceproviders) would also give a more completeunderstanding of the situation surroundingthe long-term management of living with thisgenetic knowledge.References1. Ministry of Health, New Zealand. Cancer in New Zealand:trends and projections 2000–2004 update. Pub Health IntelligenceOccasional Bulletin. 2004:49.2. Parmet S, Lyn C, Glass RD. Genetics and breast cancer. JAMA.2004;292:522.3. Evans DGR, Lalloo F. Risk assessment and management of highrisk familial breast cancer. J Med Genet. 2002;39:865–871.4. Narod SA, Foulkes WD. BRCA1 and BRCA2: 1994 and beyond.Nature Reviews: Cancer. 2004;4:665–676.5. Anglian Breast Cancer Study Group. Prevalence andpenetrance of BRCA1 and BRCA2 mutations in a populationbased series of breast cancer cases. Brit J Cancer.2000;83:1301–1308.6. Blackwood MA, Weber BL. BRCA1 and BRCA2: from moleculargenetics to clinical medicine. J Clin Oncol. 1998;16:1967–1977.7. Thompson A, Brennan K, Cox A, et al. Evaluation of currentknowledge limitations on breast cancer research: a gap analysis.Breast Cancer Res. 2008; 10: R26 (doi10.11.1186/bcr1983)8. New Zealand Guidelines Group Management of Early BreastCancer. Wellington: New Zealand Guidelines Group; 2009.9. Morrow M, Gradishar W. Breast cancer. BMJ.2002;324:410–414.10. Press N, Reynolds S, Pinsky L, et al. ‘That’s like chopping off afinger because you’re afraid it might get broken’: disease andillness in women’s views of prophylactic mastectomy. Soc SciMed. 2005;61:1106–1117.11. Pharoh PDP, Day NE, Duffy S, et al. Family history and the riskof breast cancer: a systematic review and meta-analysis. Int JCancer. 1997;71:800–809.12. Chen S, Parmigiani G. Meta-analysis of BRCA1 and BRCA2penetrance. J Clin Oncol. 2007;25:1329–1333.13. Bouchard L, Blancquaert I, Eisinger F, et al. Prevention and genetictesting for breast cancer: variations in medical decisions.Soc Sci Med. 2004;58:1085–96.316 VOLUME 2 • NUMBER 4 • DECEMBER 2010 J OURNAL OF PRIMARY HEALTH CARE
ORIGINAL SCIENTIFIC PAPErSquaLItative research14. Wideroff L, Freedman A, Olson L, et al. Physician use ofgenetic testing for cancer susceptibility: results of a nationalsurvey. Cancer Epidemiol Biomarkers Prev. 2003;12:295–303.15. Pinkowish MD. Family physicians and referrals of low-riskwomen for BRCA1/2 genetic services. CA Cancer J Clin.2009;59:70–72.16. McCann S, Macauley D, Barnett Y. Genetic consultations inprimary care: GPs’ responses to three scenarios. Scand J PrimHealth Care. 2005;23:109–114.17. Aalfs CM, Smets E, de Haes H, Leschot N. Referral forgenetic counselling during pregnancy: limited alertness andawareness about genetic risk factors among GPs. Fam Pract.2003;20(2):135–141.18. Tyler C, Snyder C. Cancer risk assessment: examiningthe family physician’s role. J Am Board Fam Med.2006;19(5):468–544.19. Calefato J, Nippert I, Harris J, et al. Assessing educationalpriorities in genetics for general practitioners and specialistsin five countries: factor structure of the genetic educationalpriorities (Gen-EP) scale. Genet Med. 2008;10(2):99–106.20. Gorin S, Ashford A, Lantigua R, et al. Effectiveness of academicdetailing on breast cancer screening among primarycare physicians in an underserved community. J Am BoardFam Med. 2006;19(2):110–121.21. Watson E, Clements A, Yudkin P, Rose P, Bukack C, Mackay J,Lucassen A, Austoker J. Evaluation of the impact of two educationalinterventions on GP management of familial breast/ovarian cancer cases: a cluster randomised controlled trial. Br Jof Gen Pract. 2001;51(471):817–21.22. Julian-Reynier C, Nippert I, Calefato J, et al. Genetics inclinical practice: general practitioners’ eduational priorities inEuropean countries. Genet Med. 2008;10(2):107–113.23. Barlow-Stewart K, Gaff C. Working in partnership withsupport services in the era of the ‘new genetics’. Med J Aust.2003;178(10):515–519.24. Grande G, Hyland F, Walter F, Kinmonth A. Women’s viewsof consultations about familial risk of breast cancer in primarycare. Patient Educ Couns. 2002;48(3):275–282.25. Tolich M, Davidson C. Starting fieldwork: an introductionto qualitative research in New Zealand. Auckland: OxfordUniversity Press; 2001.26. Pinsky L, Culver J, Hull J, et al. Why should primary care physiciansknow about breast cancer genetics? West J Med. 2001Sep;175(3):168–173.27. Baars M, Henneman L, Ten K, Deficiency of knowledge ofgenetics and genetic tests among general practitioners, gynaecologistsand paediatricians a global problem. Genet Med.2005;7(9):605–10.28. Morse J. The significance of saturation. Qual Health Res.1995;5:147–149.29. Stake RE. Case studies. In: NK Denzin and YS Lincoln, editors.The SAGE handbook of qualitative research. Thousand Oaks:Sage; 2000.30. American Society for Clinical Oncology. Genetic testing forcancer susceptibility. J Clin Oncol. 2003;21:2397–2406.31. Haynes DF. Follow-up of patients with early breast cancer. NEngl J Med. 2007;356:2505–2513.32. Chlebowski RT, Kuller LH, Prentice RL, et al. Breast cancer afteruse of estrogen plus progestin in postmenopausal women.N Engl J Med. 2009;360:573–587.33. Punglia MJ, Morrow M, Winer EP, Harris JR.Local therapy andsurvival in breast cancer. N Engl J Med. 2007;356:2399–2405.34. Jasper MJ, Liebelt J, Hussey ND. Preimplantation genetic diagnosisfor BRAC1 exon 13 duplication mutation using linkedpolymorphic markers resulting in a live birth. Prenat Diagn.2008 Apr;28(4):292–298.35. Shapiro CL, Recht A. Side effects of adjuvant treatment ofbreast cancer. N Engl J Med. 2001 Jun;344(26):1997–2008.36. Smith IE, Dowsett M. Aromatase inhibitors in breast cancer. NEngl J Med. 2003;348:2431–2442.37. Ziegler LD Kroll SS. Primary breast cancer after prophylacticmastectomy. Am J Clin Oncol. 1991 Oct;14(5):451–454.38. Crump RJ. ‘Going-to-have-cancerness’ experiences of breastcancer genetic susceptibility. Unpublished Master of HealthScience (Bioethics) thesis, University of Otago; 2005.39. White S, McLeod D. Genetic testing: a survey of New Zealandgeneral practitioners’ knowledge and current practice.Prepared for the National Health Committee, General PracticeDepartment, Wellington School of Medicine and Health Sciences,University of Otago, New Zealand; 2003.40. Lerman C, Croyle RT, Tercyak KP, Harman H. Genetic testing:psychological aspects and implications. J Consult Clin Psychol.2002 Jun;70(3):784–797.ACKNOWLEDGEMENTSThanks to the participantsand the supervisorsof the earlier MastersThesis, Ruth Fitzgeraldand Lynley Anderson.COMPETING INTERESTSNone declared.VOLUME 2 • NUMBER 4 • DECEMBER 2010 J OURNAL OF PRIMARY HEALTH CARE 317
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Page 57 and 58: improving performancemany general p
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Page 61 and 62: improving performanceInfluenza H1N1
Page 63 and 64: improving performanceThe Primary Ca
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Page 67 and 68: improving performancefor other illn
Page 69 and 70: BACK TO BACKvariable, with some lef
Page 71 and 72: BACK TO BACKAll people over 75 year
Page 73 and 74: BACK TO BACKthere is no net benefit
Page 75 and 76: continuing professional development
Page 77 and 78: viewpointabout why achieving low or
Page 79 and 80: viewpointfunding options. However,
Page 81 and 82: ETHICSObesity, autonomy and the har
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Page 87 and 88: BOOK REVIEWSof law and morals that
Page 89 and 90: RESEARCH GEMSCommunication skills a
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