Ethics toolkit: Tackling Ethical Issues in Genetics

This toolkit provides a practical, case-based introduction to some of the methods used to tackle ethical issues in genetics.

Introduction

With the completion of the human genome project and the ever-increasing range of genetic tests, genetic information has an increasingly important role in our lives. Yet whilst genetics promises a great deal, ethical problems are already arising. For example:

• Is it ever acceptable to screen our children for genetic conditions?
• Should we disclose our genetic risks to other members of our families?
• Should scientists have access to genetic samples for the purpose of research?

Ethics provides us with one set of methods for approaching these kinds of difficult questions. In ethics, we aim to decide what we ought to do in response to a particular problem, having regard to the rights, obligations and interests of all affected parties.

Although there are many ethical theories about what the right action would be in different situations, this toolkit focuses on those areas in common between various ethical theories.

Case Study

Throughout this toolkit, the following hypothetical case will be used to illustrate how ethical problems can be tackled:

Peter is a 32-year old pilot for a commercial airline. He is married to Amita and they have two young children. Peter's father and older sister both died in their early 30's from heart attacks, although they had very healthy lifestyles. Peter and Amita aim to live as healthily as they can: they eat well and participate in several sporting activities, as do their children.

Peter's family history suggests that he may be at risk of Hypertrophic Cardiomyopathy (HCM). First described in the 1950s, this condition leads to excessive heart muscle growth and a large heart. Symptoms of the condition can often (but not always) include chest pain, dizziness, loss of consciousness and breathlessness. Its progression is usually slow, but there is also a significant incidence of sudden death.

HCM is inherited as an autosomal dominant condition. That is, a person with one copy of the mutated gene will develop HCM, and each child of an affected parent is at 50% risk of also developing the condition. Around 1 in every 500 people in the United Kingdom is affected.

Once diagnosed, those carrying the mutation can be given a drug therapy (or have surgery if they do not respond to drugs). Additionally, they are advised to avoid violent exercise, prolonged standing in hot conditions and hot showers or baths. They also require special monitoring when under anaesthetic.

Peter is aware of his risk for HCM and is considering a DNA test.

What issues might arise if he decides to proceed?

Continue to Stage One