Journal of Clinical Research & Bioethics

Abstract

The Symbolic Relevance of Feedback: Return and Disclosure of Genomic Research Results of Breast Cancer Patients in Belgium, Germany and the UK

Imme Petersen and Regine Kollek

Objective: Current bioethical debates on privacy in genomic research have not yet sufficiently considered the ethical duty to return individual study results. Anonymizing data, albeit problematic in genomics, would alleviate some privacy concerns but hampers access to individual research results. However, little empirical data exist on the concerns about losing privacy and the expectations of receiving study results on the part of the patients who participate in genomic research. This paper’s objective is to elucidate how participants conceptualize the tension between data privacy and access in genomic research.
Methods: As comparative studies are missing, we explored participant attitudes and perceptions about privacy concerns and expectations of receiving study results in three national study populations (Belgium, n=152; United Kingdom, n=122; and Germany, n=122). The recruited survey participants were breast cancer patients who provided bio-specimens to genomic cancer research.
Results: Only half the respondents believed that legislation in their country is sufficient to protect health information. However, potentially stigmatizing health conditions and genetic test results were scored as sensitive data. Regarding third-party disclosure, 48% did not want their health data disclosed to family members without consent; more than 80% wanted to be protected against unauthorized data transfer to insurance companies and employers. The respondents preferred receiving aggregate rather than individual study results. The preferred contact methods were a circular letter by mail (aggregate results) and a consultation with the physician (individual results). Regarding national differences, the survey results were quite homogeneous; only the British survey showed a few statistically variations.
Conclusion: Participants in genomic research regarded the tissue they provided as something personal and private. Hence, they expected some form of reciprocity expressing appreciation towards the study participant. Our survey suggests that participant expectations about what they should receive can be primarily of symbolical relevance, e.g: a summary of aggregate study findings.