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In Reply

Dana-Farber Cancer Institute, University Laval, and Departments of Psychiatry and Medicine, Harvard Medical School, Boston, MA

We were very pleased to read the letter sent by our German colleagues¹ and to note that their sample characteristics and findings were similar to ours.² It is rewarding to see that cultural differences do not diminish the strength of the relationships we observed in patterns of family communication following BRCA1 and BRCA2 testing.

While our study did not include the informing of second-degree relatives, the data Gadzicki et al¹ report is similar to findings in other studies^3,4 and they offer several interesting hypotheses to explain their results. Another possible rationale about the reluctance of tested individuals to inform second-degree relatives has been described in the context of families with hereditary nonpolyposis colorectal cancer mutations.⁵ This hypothesis is that within families there are rules, probably often unspoken, about who has the right to inform certain relatives about weighty matters. A rule may be that only parents have the right to inform their children, whether the children are minors or adults. Thus, it could be that comparatively few nieces and nephews were directly informed by the tested individual in the Gadzicki et al study because the rule was that only the children's parents (ie, the patient's siblings) have the right to tell their offspring. Similarly, patients with living aunts and uncles may not tell their cousins out of a belief that the cousins should be told by their own parents about any familial cancer predisposition mutations. When cousins, nephews, and nieces do not have living parents or when they have a particularly close relationship with the tested patient, then direct informing may occur, accounting for the approximately 25% to 40% of individuals in those categories who were informed.

Both of our reports clearly highlight the need for more comprehensive methods for studying whole families and the complex chain of communication by which genetic information spreads within the family. We need to understand at much deeper levels the reasons behind communication, or the lack of communication, of genetic information and test results between relatives. While it is instructive to know that closer emotional relationships make it more likely that the information will be shared, we need to have a better understanding of what constitutes close emotional ties in this context and what other characteristics, besides sex and test results, contribute on an individual level to a person's decision to tell family members about something which could ultimately impact the length and quality of their lives.

While the recommendations for screening and the consideration of risk-reducing surgeries by mutation carriers which various groups have produced are very important, it is possible that the most important recommendation of all is to inform other blood relatives about the presence of a deleterious cancer predisposition mutation in the family. The telling or not telling of others at risk has enormous overall impact as it can initiate or impede a cascade of testing over many generations with potential gains or losses of many quality years of life. We do not yet have any data on the impact of decisions not to inform family members who later become ill and who learn that genetic information was known by some relatives but not shared. We join our German colleagues in encouraging future research, which will help us to answer what may be one of the most important translational questions of all—how to thoroughly assess family communication so that we understand enough about how families spread sensitive, genetic information to be able to devise interventions to reduce the burden on the messenger and to enhance intrafamilial communication.

Authors' Disclosures of Potential Conflicts of Interest

Although all authors completed the disclosure declaration, the following author or immediate family members indicated a financial interest. No conflict exists for drugs or devices used in a study if they are not being evaluated as part of the investigation. For a detailed description of the disclosure categories, or for more information about ASCO's conflict of interest policy, please refer to the Author Disclosure Declaration and the Disclosures of Potential Conflicts of Interest section in Information for Contributors.

Authors Employment Leadership Consultant Stock Honoraria Research Funds Testimony Other Judy E. Garber Novartis Pharmaceuticals (A)

Dollar Amount Codes (A) < $10,000 (B) $10,000-99,999 (C) $100,000 (N/R) Not Required

ACKNOWLEDGMENTS

This research was supported by Grant No. 5RO1HG01244 from the Ethical, Legal, and Social Implications branch of the National Human Genome Research Institute, National Institutes of Health.

REFERENCES

1. Gadzicki D, Wingen L, Teige B, et al: Communicating BRCA1 and BRCA2 genetic test results. J Clin Oncol: 10.1200/JCO.2006.06.3750

2. Patenaude AF, Dorval M, DiGianni LS, et al: Sharing BRCA1/2 test results with first-degree relatives: Factors predicting who women tell. J Clin Oncol 24:700-706, 2006[Abstract/Free Full Text]

3. Claes E, Evers-Kieboom G, Boogaerts A, et al: Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet 116:11-19, 2003

4. McGivern B, Everett J, Yager GG, et al: Family communication about positive BRCA1 and BRCA2 genetic test results. Genet Med 66:503-509, 2004

5. Peterson SK, Watts BG, Koehly, LM, et al: How families communicate about HNPCC genetic testing: Findings from a qualitative study. Am J Med Genet 119C:78-86,

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