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ORIGINAL SCIENTIFIC PAPERSquaLitative researchdeveloping breast cancer at 70 years of age havebeen estimated to be 55% for BRCA1 and 47% forBRCA2. 12 However, the actual risk level is oftenunknown for breast (and other cancers) 6 relativeto the specific mutation present in the family. 3,8Studies of primary health care provision to theaffected patients suggest wide cultural variationsin practice. 13 Anglo-Saxon countries view thevalue of genetic testing as a means of preventingcancer in which patients carry high responsibilitiesfor making appropriate lifestyle changes. Frenchguidelines, on the other hand, favour the preservationof fertility and bodily integrity. Variationsin referral for genetic testing exist within Anglo-Saxon countries as well 14 with suggestions from theUSA for more uniform approaches to both communicatingand assessing risk. A recent USA surveydemonstrated a trend for family physicians to referinappropriate (i.e. low risk) patients for genetictesting when the patients themselves request theservice. 15 Internationally there have been severalstudies noting the need for better understanding ofthe principles of genetic risk assessment by primaryand tertiary health care providers; 16,17,18 the value ofproviding education programmes; 19–22 and the needto focus on education in how to approach the topicof risk in concrete terms within clinical practicerather than in abstracted terms of bioethics or biologicalscience. 23,24 A United Kingdom (UK) studyfrom 2002 exploring patients’ understandings ofGP consultations over presumed high familial riskof breast cancer indicated that GPs had a major taskof reassurance. Failure to reassure in these circumstancesresulted from the GPs lacking awarenessthat patients frequently held very differentunderstandings of the mechanisms of disease andheredity in relation to their specific medical risk. 24This paper explores how six New Zealand womenlived with the knowledge of the increased familialand/or personal risks of cancers associatedwith BRCA1 and 2 mutations against the broaderbackdrop of these studies. This project was conductedas research for a Masters Thesis in HealthSciences (Bioethics).MethodsA semi-structured interview on the general topicof living with a high familial and/or individualrisk of breast cancer, lasting one to two hours,was undertaken with six women who had consideredgenetic counselling for their perceived highrisk for a BRCA mutation. The participants representedfive distinct families with increased familialrisk for the mutations in the South Island.The first round of interviews was conducted during2003/2004, the second interviews in 2007,although two participants were lost to follow-up(via illness and relocation). The second interviewscaptured data regarding the continued experienceof living with the knowledge of increased risk.Table 1 contains a summary of the demographiccharacteristics of the participants. All six identifiedwith New Zealand European ethnicity andfour out of six participants had been tested priorto the first round of interviews. Since the firstinterviews, two of the participants each have hada sister diagnosed with breast cancer.The initial interviews covered the topics ofparticipants’ experiences of a family history ofbreast cancer, their understanding of the riskof a predisposition to inherited breast cancer,issues around screening recommendations andprophylactic interventions, influences on decidingwhether to undergo genetic counselling and/or testing, the use of genetic testing, impacts onrelationships once genetic test results are known,disclosure of any genetic information gained, andmethods used to adjust to the information. Thesecond interviews reviewed participants’ originalcomments to evaluate the relevance of the initialfindings to their current views.Data collection and analysis was qualitative,based on audiotaped interviews, transcribedverbatim and returned to each participant forchecking. Selected interview passages were thematicallycoded 25 and then collated into commonthemes of interest by the first author and checkedby the second author.These results cannot be used to predict widertrends in this subpopulation of high risk womenbecause of the small number of participants;however they do reflect the views of members offive different families within the South Island.Morse suggests that six participants are adequatefor distilling the ‘essence of experience’ and312 VOLUME 2 • NUMBER 4 • DECEMBER 2010 J OURNAL OF PRIMARY HEALTH CARE
ORIGINAL SCIENTIFIC PAPErSquaLItative researchStake also supports the intensive study of purposivelysampled individuals for such a purpose. 28,29Ethical approval was obtained from the Otago,Southland and Canterbury (02/12/197) ethicscommittees. The low number of participantsresulted from initial ethical approval beingcontingent upon recruitment via a third party(the Genetics Service) with its attendant poorresponse rate and lengthy time delay. Subsequentapproval removed this criterion. Ethicsapproval required that family members were notmade aware of other family members’ participation,thus prohibiting the use of a ‘snowballing’recruitment strategy.FindingsThe eight themes identified (see Table 2) werecommon to all six interviewees at first interview.At second interview, themes 1, 5, 6, and 8emerged as increasingly dominant for the remainingfour women in the study.DiscussionWHAT GAP THIS FILLSWhat we already know: The responsibilities of primary care providersto explain and refer individuals and families for genetic testing is interpreteddifferently in different cultural settings. Furthermore, patients may not sharethe same understanding of genetics and heredity as providers, with resultingdifficulties in establishing a common base of knowledge.What this study adds: This small South Island study explores six patients’perspectives of the experiences of living longer-term with personal and familialrisk for BRCA1 and 2 mutations. It demonstrates the difference in theirunderstandings of their risk to that of conventional biomedical and primarycare accounts of such risk, and the implications of this difference.At first interview, all the informants spoke to alleight themes with equal emphasis (Table 2) indicatingthat the narrative of living with BRCA1and 2 mutation risk was organised around thesesocial experiences. Over the three-year interval,however, these women’s lived experiences ofmanaging high familial and/or personal risks ofcancer caused them to shift anxiously towardsdeeper medicalisation (theme 6) of lives that (forfive out of six of them) were seemingly healthy.The women spoke of living with an increasedcancer risk as a state of ‘hypochondria’, ‘paranoia’,‘stress’, ‘anxiety’ and having it always ‘atthe back of your mind’. Another less obviouseffect was the implication from their GPs thatTable 1. Demographics and family historyParticipants 1 2 3* 4 5* 6Recruitment method GS GS GS Advert Medical Specialist AdvertAge at first interview 52 45 47 28 52 38Age at testing 50 43 45 Ineligible 50 UntestedEducational attainment 3 years high school School cert. Degree Masters degree Polytech cert. Trade cert.Participant cancer diagnosis No No No No Yes NoMutation confirmed Yes Yes Yes Not tested No useful result Not testedNo. of relatives tested—mutation confirmedNo. of relatives tested—no mutation detectedNo. of relatives diagnosedwith breast cancer(at 1 st interview)No. of relatives diagnosedwith other cancers(at 1 st interview)GS: Genetic Service*Lost to follow-up (i.e. moved, presumed deceased) at time of 2nd interview5/5 5/5 3/6 – – –– – 3/6 – – –3 3 5 6 7 3– – 3 4 4 2VOLUME 2 • NUMBER 4 • DECEMBER 2010 J OURNAL OF PRIMARY HEALTH CARE 313
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