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Anger and Forgiveness"Are You There Alone?"10 Good Questions about Life and DeathA Casebook of Ethical Challenges in NeuropsychologyA Companion to BioethicsA Companion to BioethicsA Companion to GenethicsA Companion to GenethicsA Companion to Muslim EthicsA Cooperative SpeciesA Critique of the Moral Defense of VegetarianismA Delicate BalanceA Fragile LifeA Life for a LifeA Life-Centered Approach to BioethicsA Matter of SecurityA Mirror Is for ReflectionA Mirror Is for ReflectionA Natural History of Human MoralityA Philosophical DiseaseA Practical Guide to Clinical Ethics ConsultingA Question of TrustA Sentimentalist Theory of the MindA Short Stay in SwitzerlandA Tapestry of ValuesA Very Bad WizardA World Without ValuesAction and ResponsibilityAction Theory, Rationality and CompulsionActs of ConscienceAddiction and ResponsibilityAddiction NeuroethicsAdvance Directives in Mental HealthAfter HarmAftermathAgainst AutonomyAgainst BioethicsAgainst HealthAgainst MarriageAgainst Moral 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Richardson offers a robust theory of the ancillary-care obligations faced by medical researchers, where "ancillary-care" is any medical attention that is not required to make the study scientifically valid. He contends that medical researchers have a moral obligation to perform ancillary-care to their research subjects that arises from their obtaining informed consent from their patients. Richardson defends this view, the "partial entrustment model", and sketches the limits of researchers' obligations.
The problem facing researchers is that in many parts of the world where medical research is done past injustices -- colonization, war, and terrorism -- have left large numbers of the population without access to satisfactory, regular care, such that minor investments in ancillary-care by researchers could save lives and substantially increase a subject's quality of life. Richardson argues that researchers have a moral obligation to provide ancillary-care for their subjects.
Richardson contends that each of us has a strong moral obligation to look after our own health and wellbeing, but argues that when a subject gives informed consent to a researcher, that subject transfers part of this moral obligation to the researcher such that the researcher has a moral obligation to look out for that subject's health -- this is the partial entrustment model. Notably, Richardson argues that in most cases patients cannot wave their right to ancillary-care when they give their informed consent; that even if they sign a waiver agreeing beforehand that a researcher has no legal obligation to provide ancillary-care regardless of what they find, the researcher will still have a moral obligation to do so (although the subject can refuse treatment after the fact).
Richardson argues a researcher's ancillary-care obligations are limited in scope and cost. A researcher cannot be obligated to undertake the crippling financial burdens associated with treatment or cure of certain illnesses. The scope of these obligations, he argues, is limited to the area being researched. Richardson considers a potential objection to this view by Dickert and Wendler, a real life case in which a research subject brought along her infant child who was suffering from an easily treatable eye infection that could otherwise cause blindness. Richardson argues that the researchers would not have any special ancillary-care obligations towards this infant, but that because the eye infection is obvious (and the treatment cheap), they would have a duty to rescue the child that arises from a separate moral principle, T.M. Scanlon's "rescue principle" -- if you are can prevent something very bad from happening, or alleviate horrible suffering, by making only a small sacrifice, you ought to do so.
For Richardson a researcher's ancillary-care obligations can be derived from three different assumptions -- (1) that each individual has a property right in their own body, (2) that we have a duty to warn others of significant harm, and (3) that all individuals have a general obligation to help others that arises from what he calls "moral entanglements", situations where one becomes aware of the situation of others that causes them to have a moral obligation to that individual. Thus when a subject gives up part of their privacy rights to the researcher, Richardson argues the researcher gains a special obligation to both warn the subject of harms discovered over the course of the research as well as provide ancillary-care for those ailments discovered through the research.
There are three problems with Richardson's account that go unaddressed. First, Richardson argues that a researcher's duty to provide ancillary-care is a special obligation she gains in virtue of a subject implicitly transferring responsibility to her via informed consent; however this special obligation seems redundant as Scanlon's "rescue principle" already produces the same kind of responsibility. Consider one of Richardson's cases -- while studying malaria, researchers will often diagnose a schistosomiasis infection. Richardson's argument suggests that researchers have an obligation to inform the subject and provide medical assistance for this infection. On Richardson's model, this obligation arises as a result of the subject giving informed consent. However, suppose that a researcher came to have this same information by accident (suppose a less moral researcher accidentally leaves a copy of his findings on one's desk) -- surely Scanlon's rescue principle would dictate that one has the same obligations to the infected subject, despite no prior informed consent. This suggests these obligations are generated by knowledge, rather than transferred through consent as the partial entrustment model suggests.
Richardson contends that ancillary-care obligations are exacerbated by past injustices, but this leads to the second problem -- Scanlon's rescue principle is a stronger version of a principle put forth in Peter Singer's infamous article "Famine, Affluence, and Morality," -- if we can prevent something very bad from happening without sacrificing anything morally significant, we ought to do so. Singer argues this principle requires each of us to give up our luxuries in order to treat, feed, and educate those in desperate need both here and abroad. Scanlon's principle requires the same, if not more. According to this principle, the researcher has a moral obligation to provide medical care to subjects and non-subjects alike, probably in a utilitarian manner, rendering ancillary-care obligations redundant. A researcher may be obligated to provide treatment for schistosomiasis to an entire population, not merely her research subjects.
Finally by restricting ancillary-care obligations to only those areas covered in the study, Richardson is encouraging researchers to restrict the scope of their study as to limit their moral obligations; but this is tantamount to pursuit of willful ignorance.
Despite these flaws, Richardson's book is a strong contribution to the field of biomedical ethics, drawing our attention to the problems facing researchers and offering a comprehensive theory of their humanitarian obligations. Richardson discusses real world and hypothetical cases and attempts to address several concerns raised by critics in a serious manner. Although analytic ethicists will wish Richardson had been more rigorous in his analysis of the moral principles in question, this book is an important step towards a fuller understanding of the moral obligations of medical researchers.
© 2013 William Simkulet
William Simkulet, Applied and Professional Ethics at University of Kansas