Moral Concerns of Different Types of Patients in Clinical <i>BRCA1/2</i> Gene Mutation Testing

Goelen, Guido; Rigo, Adelheid; Bonduelle, Mary-Louise; Grève, Jacques De

doi:10.1200/jco.1999.17.5.1595

Cited by 28 publications

(29 citation statements)

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“…Others have focused more on the testing decisions and on family communication of genetic information including disclosures of BRCA test results (Green et al, 1997;Hallowell et al, 2003; d'Agincourt-Canning, 2006; d'Agincourt-Canning, 2001;Forrest et al, 2003;Foster et al, 2002;Goelen et al, 1999;Hallowell et al, 2005a;Hallowell et al, 2005b;Hamilton et al, 2005;Kenen et al, 2004 …”

Section: Methodology Of the Studies Outlined Abovementioning

confidence: 99%

“…Among these, they consider the implications for not only themselves but also for their family members (Foster et al, 2002;Kenen et al, 2003a;Kenen et al, 2006;Hallowell, 1999;Goelen et al, 1999). Taking the lead from Gilligan (1982) who studied psychological theory of women, Hallowell (1999) suggests that individuals (especially women) considering testing think about implications for their family because they are thinking of themselves as 'selves-in-relation', defining themselves in terms of their relationships with and obligations to their family.…”

Section: Decisions About Uptake Of Genetic Testing In the Context Of mentioning

confidence: 99%

Section: Decisions About Uptake Of Genetic Testing In the Context Of mentioning

confidence: 99%

“…Taking the lead from Gilligan (1982) who studied psychological theory of women, Hallowell (1999) suggests that individuals (especially women) considering testing think about implications for their family because they are thinking of themselves as 'selves-in-relation', defining themselves in terms of their relationships with and obligations to their family. The research that characterizes this idea is presented here.Many research participants stated that getting information for family members was an important reason to have BRCA testing (Hallowell, 1999;Tercyak et al, 2007;Phelps et al, 2007;Foster et al, 2004;Daly et al, 2001;Goelen et al, 1999;Foster et al, 2002;Hallowell et al, 2003). Some went a step further and insisted that it was their duty, obligation or responsibility to pursue testing (Hallowell et al, 2003;Hallowell, 1999;Kenen et al, 2003a) because they perceived that their family members had a right to know their own risk for cancer (Hallowell, 1999;Daly et al, 2001).…”

mentioning

confidence: 99%

“…Some went a step further and insisted that it was their duty, obligation or responsibility to pursue testing (Hallowell et al, 2003;Hallowell, 1999;Kenen et al, 2003a) because they perceived that their family members had a right to know their own risk for cancer (Hallowell, 1999;Daly et al, 2001). Research participants sometimes approached testing as a chance to 'do right' by their families (d'Agincourt-Canning, 2001) or to fulfill their obligations to care for other family members (Hallowell et al, 2003), benefiting their families by providing information that could allow them to protect themselves from cancer (Goelen et al, 1999; d'Agincourt-Canning, 2001).The decision to have testing was also sometimes made to gain information that might help them fulfill the obligation they felt to stay alive for their family members (Kenen et al, 9 2003a;Hallowell, 1999;Foster et al, 2002). Mothers of young children (Kenen et al, 2003a) and women whose own mothers had been ill or had passed away when they were children (Hallowell, 1999;Foster et al, 2002) especially felt an obligation to survive.…”

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confidence: 99%

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The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

Douglas¹,

Hamilton

Grubs³

2009

Journal of Genetic Counseling

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Individuals with a personal or family history of cancer can pursue testing for mutations in BRCA1 and BRCA2, breast and ovarian cancer susceptibility genes, in order to help them make decisions about cancer risk-reducing surgeries and other management options. However, this genetic testing can also have emotional consequences, not only for the tested individual but also for his or her relatives since testing can provide risk information for them as well. Thus, this study investigated the impact of BRCA testing on family dynamics and family relationships. A qualitative research design was employed, in which a secondary analysis was conducted on interview transcripts. In the initial study, two open-ended, tape-recorded interviews were performed using grounded theory methodology with each of 12 participants approximately three years apart. All participants had tested positive for a mutation in either BRCA1 or BRCA2.Thematic analysis of interview transcripts was conducted in the current secondary analysis to characterize family relationships after BRCA testing. Three main themes were identified: 1.That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family, especially those associated with BRCA testing, often change after genetic testing; and 3. That individuals may feel more or less connected to certain family members after genetic testing has occurred in the family. These changes in family dynamics seem to depend on the family history of cancer, prior relationships within the family, emotional coping strategies of relatives, value placed on particular iv communication patterns, and sharing or not sharing the family's BRCA mutation. The results of this study highlight the profound changes in family life that can occur after BRCA testing.Health professionals can use the insight they gain from this study in their management of patients considering BRCA testing. This work also has public health relevance since it describes how genetic testing for susceptibility to a common disease can influence family dynamics. Such an understanding will be important as the genetic basis of common disease becomes better understood and tests for additional susceptibility genes become available. PREFACEFirst and foremost, I would like to acknowledge all of the participants in this study for sharing their experiences so openly. These individuals were truly an inspiration to me and have greatly The preliminary interviews were supported by a research grant to Dr. Rebekah J.Hamilton from Sigma Theta Tau International. INTRODUCTIONIn the 1990s, the discovery of the BRCA genes offered an explanation for the clustering of ovarian cancer and early onset breast cancer in some families. In these families, it was found that individuals who inherited a mutated copy of a BRCA gene had a lifetime risk of cancer much higher than that of the general population, while those who did not inherit a gene mutation had no elevated risk (Ford et al., ...

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Section: Methodology Of the Studies Outlined Abovementioning

confidence: 99%

Section: Decisions About Uptake Of Genetic Testing In the Context Of mentioning

confidence: 99%

Section: Decisions About Uptake Of Genetic Testing In the Context Of mentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

Douglas¹,

Hamilton

Grubs³

2009

Journal of Genetic Counseling

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Ethics and Evidence

Hallowell¹

2006

Encyclopedia of Life Sciences

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The familial nature of genetic information raises issues about patient confidentiality and the legitimacy of disclosure to biological kin. Ethical arguments center on the right to privacy versus the right to obtain knowledge about oneself. Empirical research suggests that, although the need for disclosure within the family is not contested, the practice of disclosing information to particular relatives is experienced as being ethically contentious.

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Ethical Issues in Genetic Testing for Cancer Susceptibility

Ackerman¹

2004

Inherited Cancer Syndromes

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The confluence of numerous factors presages the growing role in clinical medicine of genetic testing for inherited cancer susceptibility. Research in molecular genetics is facilitating the localization and sequencing of new cancer susceptibility genes. Critical issues regarding the importance of specific mutations within genes, the penetrance and expressivity of these mutations, the value of medical interventions in reducing cancer risks, and appropriate methods of counseling patients are being addressed in carefully designed studies. At the same time, more efficient technologies for DNA analysis are being developed that will enable these tests to be performed at a more reasonable cost, while yielding a higher percentage of informative results. Recognizing the considerable profit potential of widespread use of tests for inherited cancer susceptibility, aggressive marketing by commercial genetics laboratories is increasing pressure on physicians to apprise their patients of the availability of testing. As more effective interventions are identified for reducing risk and treating disease, managed care organizations, health insurers, and self-insured employers may also encourage testing as a means to control healthcare costs.The capability to perform these tests possesses considerable promise for enhancing the clinical care of patients. If effective preventive measures, surveillance regimens, and/or prophylactic interventions can be devised to reduce the risk of the onset of cancer or facilitate early identification and treatment, genetic testing will enable patients to assume a substantial measure of active control over their inherited cancer risk. At the same time, these developments present perils that may undermine the intended benefits of their clinical application. Uncertainties abound regarding the medical, psychological, familial, and social implications of identifying persons with inherited cancer susceptibility. These uncertainties generate complex questions regarding the contours of our moral obligations in the context of genetic testing. Critical questions arise regarding the moral obligations of healthcare providers, patients, and society.These moral questions can be grouped around the requirements of three basic moral principles. The first is the principle of beneficence.

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Moral Concerns of Different Types of Patients in Clinical BRCA1/2 Gene Mutation Testing

Abstract: Knowledge of the moral concerns of subjects in the study sample may help health care providers be aware of the moral concerns of their own patients. This report may also contribute to the debate on predictive testing for familial adult-onset diseases from the patient's perspective.

Cited by 28 publications

References 9 publications

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

Ethics and Evidence

Ethical Issues in Genetic Testing for Cancer Susceptibility

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