Department of Philosophy Works

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What Makes International Research Ethical (Or Unethical)?
(2006-02-06T16:05:25Z) Meslin, Eric M.
First lecture in a series: International Research Ethics. February 3, 2006.
A Needs Assessment to Build International Research Ethics Capacity at Moi University
(University of California Press Caliber (Online service), 2006-06) Sidle, JE; Were, E; Wools-Kaloustian, K; Chuani, C; Salmon, K; Tierney, WM; Meslin, Eric M.
International collaborators in biomedical sciences face ethical challenges in the design,review, and conduct of research. Challenges include differences in research ethics capacity, cultural differences in interpretation and application of ethical principles, and cooperation between ethics review boards at collaborating institutions. Indiana University School of Medicine (Indianapolis, USA) and Moi University Faculty of Health Sciences (Eldoret, Kenya)developed a Memorandum of Understanding (MOU) to establish greater cooperation between their ethics review boards, followed by a joint needs assessment to assess barriers to implementing the MOU. Focus groups and interviews at each institution revealed that while each side verbalized understanding and respect for the other's culture, there were misunderstandings deeply rooted in each culture that could potentially derail the collaboration. Although the participants at each university agreed on the major principles and issues in research ethics and on the importance attributed to them, a more in-depth evaluation of the responses revealed important differences. Methods to address these misunderstandings are outlined in the recommended Best Practices.
Pediatric assent for a study of antiretroviral therapy dosing for children in western Kenya: a case study in international research collaboration
(Regents of the University of California, 2009-03) Vreeman, Rachel C.; Nyandiko, Winstone M.; Meslin, Eric M.
Multinational collaborators in health research face particular ethical challenges when conducting studies involving vulnerable populations such as children. We use an example from our first attempt to implement pediatric assent in the context of a longstanding research and clinical partnership between Kenyan and American medical schools to highlight the ethical and procedural issues related to pediatric assent that must be considered for multinational, pediatric studies. We consider relevant domestic, professional, and international guidelines for assent in pediatric research subjects, and we discuss the particular ethical challenges related to pediatric assent in the Kenyan context. Finally, we propose a way forward for approaching pediatric assent within our collaborative research program in Kenya that may apply to other multinational research partnerships.
Disclosure and rationality: comparative risk information and decision-making about prevention
(Theoretical medicine and bioethics, 2009) Schwartz, Peter H.
With the growing focus on prevention in medicine, studies of how to describe risk have become increasing important. Recently, some researchers have argued against giving patients "comparative risk information," such as data about whether their baseline risk of developing a particular disease is above or below average. The concern is that giving patients this information will interfere with their consideration of more relevant data, such as the specific chance of getting the disease (the "personal risk"), the risk reduction the treatment provides, and any possible side effects. I explore this view and the theories of rationality that ground it, and I argue instead that comparative risk information can play a positive role in decision-making. The criticism of disclosing this sort of information to patients, I conclude, rests on a mistakenly narrow account of the goals of prevention and the nature of rational choice in medicine.
The ethics of information: absolute risk reduction and patient understanding of screening
(Journal of General Internal Medicine, 2008-06) Meslin, Eric M.; Schwartz, Peter H.
Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decision-making. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges stem from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence.
Defining dysfunction: natural selection, design, and drawing a line.
(Philosophy of Science, 2007-07) Schwartz, Peter H.
Accounts of the concepts of function and dysfunction have not adequately explained what factors determine the line between low-normal function and dysfunction. I call the challenge of doing so the line-drawing problem. Previous approaches emphasize facts involving the action of natural selection (Wakefield 1992a, 1999a, 1999b) or the statistical distribution of levels of functioning in the current population (Boorse 1977, 1997). I point out limitations of these two approaches and present a solution to the line-drawing problem that builds on the second one.
Decision and discovery in defining 'disease'
(Springer, 2007) Schwartz, Peter H.
The debate over how to analyze the concept of disease has often centered on the question of whether to include a reference to values, in particular the ‘disvalue’of diseases, or whether to avoid such notions. ‘Normativists,’such as King ([1954], 1981) and Culver and Gert (1982) emphasize the undesirability of diseases, while ‘Naturalists,’ most prominently Christopher Boorse (1977, 1987, 1997), instead require just the presence of biological dysfunction. The debate between normativism and naturalism often deteriorates into stalemate, with each side able to point out significant problems with the other. It starts to look as if neither approach can work. In this paper, I argue that the standoff stems from deeply questionable assumptions that have been used to formulate the opposing positions and guide the debate. In the end, I propose an alternative set of guidelines that offer a more constructive way to devise and compare theories.
The value of information and the ethics of personal-genomic screening.
(The American Journal of Bioethics: AJOB, 2009-04) Schwartz, Peter H.
Personal genomic screening, especially when marketed direct-to-consumers, threatens to worsen the inefficient use of healthcare resources that Burger and Kass discuss in the case of unproven screening tests. The information that genomic and other screening tests can provide may well have value for many patients, but its effective use in healthcare depends on careful thought about the ethics of testing and the proper regulation of unproven interventions.
Biobanks and Electronic Health Records: Ethical and Policy Challenges in the Genomic Age
(IU Center for Applied Cybersecurity Research, 2009-10) Meslin, Eric M.; Goodman, Kenneth
In this paper we discuss the ethical and policy challenges presented by the construction and use of biobanks and electronic health records systems, with a particular focus on how these resources implicate certain types of security concerns for patients, families, health care providers and institutions. These two technology platforms are selected for special emphasis in this paper for two reasons. First and foremost, there is a close connection between them. Indeed, of the many accepted definitions, this one from the German National Bioethics Commission provides a sense of this close connection and the great power and reflects the great power these two separate platforms provide to probe more deeply the connection between genotype and phenotype: "...[B]iobanks are defined as collections of samples of human bodily substances (e.g., cells, tissues, blood or DNA as the physical medium of genetic information) that are or can be associated with personal data and information on their donors." Second, these two topics implicate both clinical ethics issues (those arising at the bedside for health care providers and patients), and human research ethics issues (issues arising for scientists, research subjects, ethics review bodies and regulatory authorities). Both of these sub-specialty areas confront similar and complementary ethical issues; for example, issues arising from the nature and adequacy of informed consent, the sufficiency of systems to protect personal privacy and confidentiality, or the need to balance concerns relating to data security and the need to know. A growing research base supports calls for more attention to these issues, and yet current professional ethics frameworks and policy consultation methods are poorly organized and ill-equipped to anticipate and fully address ethical issues in health information technology generally, or to provide adequate ethical assessment of the tools that elicit these issues. Our strategy is to orient readers to the history and context of these issues, to frame several key challenges for researchers and policy makers, and then to close with several recommendations for next steps.
To be or not to be - a research subject
(Cambridge University Press, http://www.cambridge.org/9780521744416, 2010) Meslin, Eric M.; Schwartz, Peter H.
Most people do not know there are different kinds of medical studies; some are conducted on people who already have a disease or medical condition, and others are performed on healthy volunteers who want to help science find answers. No matter what sort of research you are invited to participate in, or whether you are a patient when you are asked, it’s entirely up to you whether or not to do it. This decision is important and may have many implications for your health and well-being, as well as those of other patients now and in the future. Making a good decision – the right one for you – requires you to become educated about topics you may not have thought about before, some of which may be quite complicated. This chapter explains the key issues to help you make a good decision.

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