Genetic testing of children for adult-onset diseases: is testing in the child's best interests?

Questions related to testing children for adult-onset genetic diseases include many variables that generate different answers among different families. These issues include the biological nature of specific genes, concern about what benefits or harms may accrue from testing children, possible psychosocial sequelae, and ethical and legal concerns about personal autonomy. The shift in the physician-patient relationship from professional beneficence to patient autonomy has established the patient, or parents, as the primary decision-makers in questions about treatment or testing options.

Human subjects, third parties, and informed consent: a brief historical perspective of developments in the United States.

The protection of human subjects in biomedical research has become a source of increasing concern over the past century. During the early days of human experimentation, the human subject was rarely if ever consulted about his or her participation in research because scientists and physicians acted in the traditional paternalistic role with respect to their subjects and patients. However, as options for both researchers and their subjects increased, more attention was focused on the rights and obligations of participants on both sides of the research relationship.

Research in human genetics: the tension between doing no harm and personal autonomy.

The physician-patient relationship was governed for centuries by the ethical principle of beneficence and the physician's dedication to the principle of doing no harm. This structure shifted, however, to the principle of personal autonomy as medical and surgical knowledge expanded and patients, rather than physicians, became the locus of decision-making authority. In biomedical research in the United States, however, beneficence of the research professional remained dominant until a spectrum of doubtful research practices was made public in the 1970s and thereafter.