THE relationship between an individual and his or her genetic status raises a difficult ethical dilemma.
Even in families at high risk of a genetic disorder, many people choose not to know. But do they have a right to ignorance when many of their family members may be kept in the dark against their wishes?
Ruth Chadwick, head of Central Lancashire University's centre for professional ethics, has just returned from Japan, where she was invited to discuss her research into the right-to-know versus the right-not-to-know our genetic status. The context was the after-effects of the atomic bombing of Hiroshima. Scientists now have crucial information about the genetic effects of the explosion, which could have a fundamental impact on survivors and their offspring.
"The Japanese have no framework for addressing the rights issues surrounding this problem," Professor Chadwick said. "They have no concept of an individual identity in which to ground any such rights and were fascinated by the idea. It will take them some time to decide how to handle this information."
Ethicists, Professor Chadwick insists, should not expect any ethical framework to be universally applicable. The right-to-know/not-to-know debate is peculiarly western as it is based on the concept of individual rights. Yet it has implications worldwide.
Professor Chadwick's research suggests there is a consensus within the philosophical community that the acquisition of knowledge is good. She challenges this, asking whether anyone else has a right to genetic information about another.
Much depends, she argues, on the grounds for supporting confidentiality. It might be justifiable, for instance, to break a confidence when non-disclosure leads to the avoidable birth of a handicapped child.
But what if there are two genetically identical twins, one who wants to be tested for a genetic predisposition and one who does not? One argument for the right-not-to-know is the harm that can result from knowledge, although Professor Chadwick stresses that it is our attitude to genetic knowledge rather than the knowledge itself that is significant.
She believes that recent moves towards a community approach to medical ethics suggests that individual rights should be replaced by consideration of individual responsibilities. This implies a responsibility to know.
"It might be argued however that the responsibility to one's partner and family is of a different kind from responsibility to institutions and employers, just as their respective needs to know are different", Professor Chadwick said.
Other factors must be taken into account such as whether the genetic information is relevant to a reproductive decision or future health care. The nature of the particular condition may also be important. Asking why an individual should know may hold the key to any future ethical framework guiding genetic screening.