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2 Principles for Decision Making Under Uncertainty
Pages 42-56

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From page 42...
... The existing principles and frameworks the committee reviewed were not entirely satisfactory for the purposes of this study. Most of the existing frameworks were not designed to address situations characterized by limited evidence and substantial scientific uncertainty -- the contexts the committee was charged to address.
From page 43...
... The other is the principle of adaptability, which builds on the call for review and revision in the National Academies framework for genetic testing and the emphasis in the USPSTF framework on revising recommendations in response to emerging scientific information. Box 2-1 briefly describes the committee's resulting five principles for exposure biomonitoring and patient follow-up under substantial scientific uncertainty about the health effects of PFAS exposure.
From page 44...
... The USPSTF framework also considers the accuracy of a screening test and its relationship to the clinical health effect, and the harms associated with the screening for the health condition and treatment of the condition. The principle of proportionality addresses harms and benefits in situations of substantial scientific uncertainty.
From page 45...
... Instead, promoting health equity in the context of this report means designing approaches that enable people to lead full, healthy lives regardless of their social circumstances, such as race, socioeconomic status, and geographic location. Health equity is a particularly important element of justice because it establishes the positive responsibility to provide the conditions necessary for people to lead healthy lives regardless of their social circumstances; without this positive responsibility, some ethicists have argued that the principle of justice does not provide significant guidance beyond what is already found in other bioethical principles, such as proportionality or autonomy (London, 2022)
From page 46...
... These less-advantaged rural communities may also have structural and agency-related factors that can impact their ability to minimize their exposure, as well as to seek and access adequate health care linked to exposures. Promoting environmental justice requires addressing these inequities, such as by taking steps to eliminate disproportionate lack of access to health care, exposure biomonitoring, patient follow-up for PFAS-associated health effects, and environmental remediation and mitigation.
From page 47...
... emphasizes that adaptability is important in decision contexts in which scientific information changes rapidly, as is the case with genetic testing. The USPSTF also emphasizes that its evaluation of the benefits and harms of preventive services is a process that needs to be revisited in light of new advances in research, testing, and treatment capabilities (Sawaya et al., 2007)
From page 48...
... Important themes relevant to the development of principles for decision making under substantial scientific uncertainty included the following:  Community members shared that they had to educate their clinicians about the exposures in their communities and the potential health effects that could result. They stated further that clinicians do not know how to provide advice on patient follow-up following PFAS exposure, whether PFAS exposure biomonitoring should be provided, or how to interpret PFAS exposure biomonitoring results if shared by the patient.
From page 49...
... . It includes evidence frameworks for several different decision contexts including clinical recommendations, individual perspective; clinical recommendations, population perspective; coverage decisions; and health system and public health recommendations or decisions.
From page 50...
... FIGURE 2-1 U.S. Preventive Services Task Force's generic analytic framework for a screening preventive service.
From page 51...
... Recommendation Grida Certainty  Magnitude of Net Benefit  of Net  Zero/ Benefit  Substantial  Moderate  Small  Negative  High  A  B  C  D  Moderate  B  B  C  D  Low  Insufficient  a A, B, C, D, and Insufficient represent the letter grades of recommendation or statement of insufficient evidence assigned by the U.S. Preventive Services Task Force after assessing certainty and magnitude of the net benefit of the service.
From page 52...
... was developed as a set of guidelines for protecting research participants. This seminal report on ethics and health care research outlines basic ethical principles and guidelines meant to assist in resolving ethical problems surrounding the conduct of research with human subjects.
From page 53...
... . These principles affirm that decision making in response to PFAS should weigh plausible benefits and harms proportionally while treating all individuals fairly, promoting health equity, respecting human rights, and supporting informed decision making by individuals in accordance with their values.
From page 54...
... The committee's principles may provide a framework that ATSDR can use when writing clinical guidance for environmental exposures. Despite findings of associations between adverse health effects and chemical exposures, substantial scientific uncertainty exists about the causal role of environmental chemicals in many health outcomes.
From page 55...
... Preventive Services Task Force: Methods for understanding certainty and net benefit when making recommendations. American Journal of Preventive Medicine 54(Suppl 1)
From page 56...
... Preventive Services Task Force: Estimating certainty and magnitude of net benefit. Annals of Internal Medicine 147(12)


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