Ethical dilemmas and legal cases in primary care genetics

Introduction

This chapter will examine in some detail the main issues in ethics and genetics that have not been covered elsewhere in the book. Three areas of particular interest have been selected. Each of these areas have a particular resonance for primary care, and afford an opportunity for a detailed ethical analysis, particularly with reference to some useful theoretical approaches.

Confidentiality: the moral structure

As has already been stated, the subject of genetic care generates much ethical debate, and perhaps the most challenging theme is that of the clinical duty of confidentiality between health care professional and patient.

Firstly, let us review why there is indeed such a duty of confidence. In ethical terms, four justifications are generally cited.

  • • It is a duty first described by Hippocrates, who tellingly suggested that our 'secrets should not be noised abroad.'1 Since then, doctors have been instructed to keep their patients' secrets. In ancient Greek times, Hippocrates related the duty as part of the character or virtue of his learners. It is therefore consistent with the foundations of European moral philosophy.
  • • Later philosophers, such as Immanuel Kant, developed a more formal theory of duties. When we now describe a duty of confidence, we lean heavily on Kant's work.2
  • • We can also argue that if there were no duty of confidentiality, patients would not share their stories with clinicians, and thus it would be impossible to provide care. This aspect highlights another moral theory, known as consequentialism, which accords moral value to those actions that bring about the best outcome.3
  • • A conception of rights, springing from English, French and American roots, offers a last explanation for the duty of confidence, where patients might claim a right to privacy with regard to their clinical information.

Several points need to be added to this necessarily brief summary of moral theory. It is overtly a summary of European and American thinking on the issues of confidentiality. In Islamic or Chinese ethics, for example, the duty of confidence is less accepted, and therefore breaches of the duty (justified or otherwise) are more easily accommodated. Different cultures and societies may make relativist decisions about confidentiality - decisions that are relatively different but morally appropriate for that culture or society. In the field of genetics, this area is undeveloped.

Genetic decisions that are made by clinicians touch on all four of these moral theories. For example, the theory of consequentialism would hold that what is morally correct is defined by the best outcome. Therefore a breach of the duty of confidence is entirely moral if the consequences for all are better than they would otherwise have been. A key aspect of consequentialism is that it is the outcomes for all that are relevant, not just those for the patient whose confidence has been breached.

Consider the following case:

Case study

E consults his general practitioner after developing headaches, and he is found to have hypertension. The GP runs the usual work-up of investigations for the newly diagnosed patient, and E returns to the practice nurse for follow-up. She notes that E has been found to have a markedly high total cholesterol level, and a lipid ratio that, according to guidelines, requires treatment. E is happy to consent to treatment with a statin as part of his further management.

In conversation, it emerges that E's son is also a patient of the practice. As a first-degree relative, he is at risk of inheriting his parent's hyperlipi- daemia. The nurse suggests to E that she should contact E's son to discuss his situation further and offer further care. E refuses to permit this, as he does not want his family to worry about his own condition, and he therefore prefers to keep the results of his work-up private.

Primary care clinicians will easily recognise this type of conversation. Sharing the care of family members is one of the key features of primary care, and therefore conflicts in the duty of confidence are a common occurrence.

 
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