The ethics of pharmacogenomics

Abstract

Of the future technologies arising from the Human Genome Project, pharmacogenomics will probably be the first to have a widespread impact on the everyday practice of medicine. This technology offers great benefits but also presents some difficult ethical challenges. This paper explains what pharmacogenomics is and examines three of the issues that it raises: orphan populations, the use of ethnicity in drug trials, and potential obstacles to informed consent for genetic testing.

Bioethics and the Reinforcement of Socio-technical Expectations

“…The same pattern can be found amongst bioethicists who cite that paper in support of pharmacogenetics' potential public health benefits, and hence as an ethical reason for its development [for example, Issa, 2000Issa, , 2002Rothstein & Epps, 2001;Thomas, 2001;Lee, 2003;van Delden et al, 2004;Mordini, 2004;Neil & Craigie, 2004;Joly & Knoppers, 2006;Lee, 2007;Peterson-Iyer, 2008]. 5 Thus while some bioethicists are sceptical in their discussions of this topic [Chadwick, 1999;Williams-Jones & Corrigan, 2003;Vaszar et al, 2003], a large number uncritically accept a key vision of this technology that centres on the public health problems presented by ADRs and pharmacogenetics' potential for solving them.…”

“…The 20 papers containing arguments or recommendations identified as being (co-) authored by ethicists are spread fairly evenly between 1999 and 2008, with one incidence in each year, apart from 2001 and 2004 (four and five papers, respectively), 2003 (three papers) and 2005 (two papers). The past 3 years (2006)(2007)(2008) have had only one 'argument' paper each [Chadwick, 1999;Issa, 2000;Issa, 2001;Renegar et al, 2001;Rothstein & Epps, 2001;Thomas, 2001;Freund & Wilfrond, 2002;Paul & Roses, 2003;Weijer & Miller, 2003;Williams-Jones & Corrigan, 2003;Mordini, 2004;Morely & Hall, 2004;Neil & Craigie, 2004;Netzer & Biller-Andorno, 2004;Shubert, 2004;Lee, 2005a;Lunshof, 2005;Joly & Knoppers, 2006;Marx-Stöting, 2007;Bolt et al, 2008]. There does not seem to have been an increase in the number of papers by bioethicists arguing for specific positions, as the possible range of ethical topics has been 'mapped out'.…”

Pharmacovigilance in a genomic era

“…45,46 An additional level of concerns derive from the societal aspects, including the ethical and legal issues associated with privacy, confidentiality, and data protection, as well as the accessibility and availability of the system for all individuals in the society and all geographical regions. 46,47 Although a detailed discussion on the aforementioned issues and the proposed solutions is crucial, it is however, beyond the scope of this commentary.…”