On 20 November, eight individuals with varying views debated the morality of genetics on BBC Radio 4's Moral Maze. They asked what the moral cost is of exploiting technologies such as selective IVF and abortion, gene manipulation and stem cell therapy to eradicate heritable conditions.
The guests were: journalist and historian Tim Stanley; author Ella Whelan; priest and polemicist Giles Fraser; chief executive of the RSA Matthew Taylor; professor of Healthcare Law at University College London Sir Jonathan Montgomery; lecturer at Keele University specialising in confidentiality Dr Michael Fay; Deputy Director at Progress Educational Trust (PET) Sandy Starr and a Senior Research Fellow at Anscombe Bioethics in Oxford Dr Helen Watt.
Central to the discussion was the case of a woman, known as 'ABC', who sued three NHS trusts for not telling her that her father had Huntington's disease (HD). She only learned about his diagnosis after she had fallen pregnant, and has since said that she would have had an abortion if she'd known. This case could challenge the ethical primacy of medical confidentiality, which has been a central principle of the Hippocratic Oath and the doctor-patient relationship for over 2500 years, some of the panellists argued.
HD is an incurable neurological degenerative condition. It is an autosomal dominant disease, with a 50 percent chance of offspring inheriting it. Unfortunately, there is no cure for HD and no treatment to slow its progression.
ABC believed that doctors' duty of care to her should have outweighed their duty of confidentiality to her father. This is not only a painful moral calculation but also a difficult legal judgment. How do we reconcile the principle of doctor-patient confidentiality with a doctor's duty to adequately inform patients for them to make reproductive choices?
In the programme, the guests debate whether the doctors should have persuaded the father to tell his daughter about the genetic implications of HD in their family. While interesting, the programme seemed to gloss over a key detail of the case, namely that ABC's father killed his wife and was consequently sectioned under the Mental Health Act. This in turn led doctors to suspect he was suffering with HD, after which he was tested positive. The father expressed his wish for his daughters not to be told. I did wonder whether, having just killed his wife, the father was in the right mental state to be able to make such a decision. Moreover, HD is known to cause extreme psychiatric tendencies including the inability to make informed judgments, and changes in mental state, behaviour, mood and personality. This medical background makes me question the decision to uphold the father's right to confidentiality.
For me, the largest flaw in the Radio 4 debate, therefore, lies with the case they used, which did not address the central question: the choice between maintaining the confidence of one patient, or a duty of care to another, where both parties are of sound mind.
That aside, the panellists did offer one solution to their hypothetical dilemma. They suggested that the doctor could 'accidentally' tell the daughter by strongly urging her to undergo genetic testing. This way, she could become aware of her diagnosis and the doctor would be able to use known genetic information without disclosing it.
It was interesting to hear how a group of highly educated individuals could have such differing views on how genetics information should be used in society. For me, the most important ethical principle should be freedom of choice; helping individuals make informed decisions. In cases where failing to disclose information would be harmful to a patient, I believe it is the doctor's duty of care to disclose it, and that a person's right to confidentiality needs to be set aside. Once in possession of the relevant information, the 'right' decision is likely to differ for each patient.
This was an informative debate surrounding the value of life and individual autonomy. An interesting debate; but a flawed case study. You can find the programme on BBC iPlayer.