PubMed · 2733910
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K Poutasi. 1989-06-14. Ethics committees.. https://pubmed.ncbi.nlm.nih.gov/2733910/
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This paper examines arguments for and against objective communication between health-care experts (HCEs) and the public concerning matters of health and disease. It argues that HCEs should have neither a purely objective approach nor a paternalistic approach to communications with the public. The informed consent model is the best way to promote public health, prevent disease, respect individual autonomy, and safeguard scientific honesty and openness. In following this model, HCEs should provide lay people with the information and advice they need to make sound decisions. They should not manipulate, distort, exaggerate, or conceal relevant information, nor should they use coercive means to induce the 'correct' decisions. Paternalistic communication only makes sense under the extraordinary challenges posed by bona fide public-health emergencies. Of course, informed people may still make unwise choices, but this is a cost that one must accept in a free, open, and democratic society.
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Public debate over the use of techniques that result in heritable changes to human germ cells (i.e., sperm and ova), called germ-cell gene interventions, lags far behind the development of such therapies. Such a debate is particularly needed now because the first steps in somatic-cell, or non-heritable, gene therapy have taken place and may accelerate the beginning of germ-cell gene therapy trials. Because germ-cell therapy affects future generations, its moral status differs considerably from that of somatic-cell therapy. To stimulate and inform public discussion, the authors review the major ethical arguments for and against germ-cell therapy that are found in the literature. (These arguments include the dangers of "playing God," of moving on the "slippery slope" to germ-cell manipulations for enhancement rather than therapy, and of causing irreversible changes to the genomes of future generations.) They demonstrate that these arguments do not apply uniquely to such therapy, since most of the properties of germ-cell therapy are present in other medical interventions or elsewhere in social interactions. For example, there are many examples of human activities that are irreversible and have effects on future generations. However, this lack of uniqueness does not necessarily imply that the moral status of germ-cell gene therapy is unique, or that it should be banned forever. The public, and especially health policymakers, researchers, and clinicians, must reflect on and discuss the issues outlined in this article before efforts are made to introduce changes into the germ cells of human beings.