PubMed · 13678899
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Wayne Kondro. 2003-09-06. John Williams.. https://doi.org/10.1016/s0140-6736(03)14271-7
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Genetic testing (predictive analysis that determines genetic alterations in individuals for clinical purposes) and screening (programs that identify persons within a subpopulation who may be at a higher risk for a genetic disease or condition) are increasingly utilized to promote and improve the public's health. The proliferate use of genetic testing and screening may improve public health outcomes, but it also implicates significant ethical, legal, and social concerns. Within the context of conflicting ethical values from the individual and public health perspectives, individual values such as informed consent and privacy and discrimination protections must be respected. Legal and ethical attempts to exceptionalize genetic tests and information (as compared to other health information) to protect privacy and prevent discrimination are well intended, but can also be unjust and impractical. Respect for individual ethical rights has limits. Principles of public health ethics justify voluntary genetic testing and screening and sharing of data for population-based health purposes. Thus, individual rights should not always trump the use of genetic tests or screening programs (or information derived therefrom) for legitimate public health purposes.
Bioethics, as a branch of philosophy that focuses on questions relative to health and human life, is closely tied to the idea of justice and equality. As such, in understanding the concept of equality in its original sense, that is, in associating it to the idea to treat "unequals" (those who are unequal or different, in terms of conditions or circumstances) unequally (differentially), in proportion to their inequalities (differences), we see that the so-called "one-and-only waiting list" for transplants established in law no. 9.434/97, ends up not addressing the concept of equality and justice, bearing upon bioethics, even when considering the objective criteria of precedence established in regulation no. 9.4347/98, Thus, the organizing of transplants on a one-and-only waiting list, with a few exceptions that are weakly applicable, without a case by case technical and grounded analysis, according to each particular necessity, ends up institutionalizing inequalities, condemning patients to happenstance and, consequently, departs from the ratio legis, which aims at seeking the greatest application of justice in regards to organ transplants. We conclude, therefore, that from an analysis of the legislation and of the principles of bioethics and justice, there is a need for the creation of a collegiate of medical experts, that, based on medical criteria and done in a well established manner, can analyze each case to be included on the waiting list, deferentially and according to the necessity; thus, precluding that people in special circumstances be treated equal to people in normal circumstances.
Although the moral responsibilities of clinicians and researchers in the new genetics are exhaustively reflected upon, much less attention has been paid to the factors affecting the moral reasoning of non-professionals when they reflect on genetic issues. In this paper, we compare the moral evaluations of somatic gene therapy (SGT) made by some of its potential consumers (patients) and its providers (medical professionals). The results highlight significant differences between professional opinion and non-professional evaluations. Medical professionals shared a moral evaluation of SGT that (a) based its acceptability on a strong therapeutic imperative, (b) grounded this in an unproblematic separation of identity and disability/illness, and (c) generally did not see SGT as ethically different from other medical interventions. Prospective patients (a) often questioned the effectiveness of "therapeutic" interventions, (b) could derive a strong sense of identity from disability/illness, and (c) sometimes saw genetic interventions as changing a person's identity, either directly (through the genes) or indirectly (through altered life experience). We discuss the implications of these differences for the professional and public debate on the ethics of gene therapy. Our results highlight the need to take into account non-professionals' views of SGT.