Ethics of direct-to-consumer personalised healthcare

21 April 2009

The Nuffield Council on Bioethics, an independent UK body that examines ethical issues arising from advances in biology and medicine, has launched a public consultation examining the ethics of health-related services and technologies that are available direct-to-consumers, as opposed to via primary care practitioners such as GPs. The consultation has a major focus on commercial genetic testing, but also looks at private and online providers of health services and medical profiles, and online pharmaceutical sales; it forms part of a larger study (see previous news).

Although there are potential benefits from this type of health service, for example convenience and accessibility, there are also concerns; for example, that consumers may receive results that are difficult to interpret or misleading, and which may cause inappropriate worry. Study chair Professor Christopher Hood commented: “…there is not much regulation of these new services and we may be getting information that causes more harm than good” (see press release). Private health services can also increase the burden on National Health Service (NHS) providers; for example, if consumers are prompted to visit their GPs with unfounded health worries, or as a result of adverse reactions to inappropriate medication purchased online. Nuffield director Hugh Whittal said: "There is a range of benefits to be had, but it is only right some questions are asked about risks, the quality of information, equity of access and the impact on the NHS" (see BBC news report).

The consultation document, Medical profiling and online medicine: the ethics of ‘personalised’ healthcare in a consumer age sets out the issues of interest, with separate sections examining electronic health records, online health information, online drug purchases, telemedicine, body imaging and DNA profiling. An additional section considered cross-cutting issues pertinent to both body imaging and DNA profiling.

The section on DNA profiling explains briefly how the UK Genetic Testing Network evaluates genetic tests for NHS purposes, considering the analytical and clinical validity, clinical utility, and the ethical, legal, and social implications of each. With respect to commercial services, concerns about the lack of regulation in this area are noted; some have called for statutory regulation and others (such as the PHG Foundation) for further consideration of how these tests should be regulated ; the document refers to the 2008 report in this area produced by the PHG Foundation and the UK Royal College of Pathologists, The Evaluation of Diagnostic Laboratory Tests and Complex Biomarkers. The document also mentions  ‘recreational genetics’ services, for example offering genealogy searches, or genetic analysis purported to aid the identification of suitable partners. The following section raises the question of what information should be provided to customers by private DNA profiling companies, and potential issues such as the testing of children and the difficulty of effective legislation or governance of an international market.

The Council is requesting contributions and views from current and potential consumers and providers of such services, researchers, academics, regulators, policy makers and other interested parties. A report detailing the findings of the consultation will be produced in 2010.

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