When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results

Fiona A Miller¹ , Mita Giacomini² , Catherine Ahern³ , Jason S Robert⁴ and Sonya de Laat³

¹Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada

²Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada

³Department of Health, Aging and Society, McMaster University, Hamilton, Canada

⁴Department of Basic Medical Sciences, University of Arizona College of Medicine, Phoenix, USA

author email corresponding author email

BMC Medical Ethics 2008, 9:4doi:10.1186/1472-6939-9-4


Published:	22 February 2008

Abstract

Background

Research ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals are served by disclosure or violated by non-disclosure, and whether the communication of research results respects ethically salient differences between research practices and clinical care. Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm.

Methods

This paper explores the implications of the disclosure of individual research results for the relationship between research and clinical care through analysis of research-based cancer genetic testing in Ontario, Canada in the late 1990s. We analyze a set of 30 interviews with key informants involved with research-based cancer genetic testing before the publicly funded clinical service became available in 2000.

Results

We advance three insights: First, the communication of individual research results makes research practices seem like clinical services for our respondents. Second, while valuing the way in which research enables a form of clinical access, our respondents experience these quasi-clinical services as inadequate. Finally, our respondents recognize the ways in which their experience with these quasi-clinical services is influenced by research imperatives, but understand and interpret the significance and appropriateness of these influences in different ways.

Conclusion

Our findings suggest that the hybrid state created through the disclosure of research results about individuals that are perceived to be clinically relevant may produce neither sufficiently adequate clinical care nor sufficiently ethical research practices. These findings raise questions about the extent to which research can, and should, be made to serve clinical purposes, and suggest the need for further deliberation regarding any ethical obligation to communicate individual research results.