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

Area of Science:

• Bioethics
• Medical Research Ethics
• Human Subject Protection

Background:

• Historically, the physician-patient relationship prioritized beneficence and non-maleficence.
• Expansion of medical knowledge shifted decision-making authority to patients, emphasizing personal autonomy.
• In US biomedical research, beneficence prevailed until unethical practices emerged in the 1970s.

Observation:

• Government regulations now enhance human research subject protections.
• Research findings are seldom shared with participants due to provisional data.
• Genetics researchers propose sharing results, acknowledging participant interest.

Findings:

• The ethical framework for research is evolving.
• Patient autonomy is increasingly recognized in research contexts.
• There is a growing consideration for sharing provisional research data.

Implications:

• Potential for new models of informed consent and data sharing.
• Enhanced participant engagement and trust in biomedical research.
• Future research may involve more transparent communication with subjects.