beliefs about the effectiveness of allopathic medicine or alternative medical practices or views about the value of disclosure of risks are not by themselves sufficient evidence that a participant lacks the characteristics needed to exercise independent, nonstandard judgment.
To enhance the autonomy of a stakeholder who pursues compensational screening, we advise counseling that provides evidence-based information about screening while respecting a stakeholder’s choice. At a minimum, no stakeholder should be screened for purposes of compensation without first meeting other administrative eligibility conditions—such as residence, occupation, or other criteria, such as PC/AS, if established by Congress. We continue this discussion in detail in Chapters 9 and 10.
In response to the many ethical concerns voiced by the stakeholders and experts who testified before the committee, we provide an ethical framework before proceeding to address the committee’s charge. We clarify and discuss the ethical concerns in this chapter to which we have referred in earlier and upcoming chapters of our report. These concerns are included in two main subjects: the ethics of a compensation program and the ethics of medical and compensational screening.