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The Genethics Club

Date of Next Meeting 

The next meeting of the Genethics Club will take place on  13th October 2008, London (Wellcome Trust, 210 Euston Road).

If you would like to attend this meeting please contact Mike Parker by email at michael.parker@ethox.ox.ac.uk A charge of £10 is made for attendance at Genethics Club (payable on the day) to cover the cost of the room and speakers' travel. The dates and venues of the three Genethics Club meetings to be held in 2009 will be announced soon.

What is the Genethics Club?

The Genethics Club is a national forum for the discussion, by health professionals, of practical ethical problems encountered in the working lives of clinical genetics departments in the United Kingdom. The Genethics Club takes place three times a year and anyone working in a clinical genetics department is welcome to come along. The meetings are relatively informal in order to facilitate discussion of cases presented from different centres. The meetings usually include a plenary talk on a particular theme of interest, such as for example, a talk by a medical lawyer on the law on confidentiality in genetics. The meetings are multi-disciplinary and aim to have a medical ethicist and an academic medical lawyer present at each meeting. The Genethics Club policy on confidentiality and case discussion is below.

What are its aims?

  • To help health professionals to identify ethical issues arising in the day to day practice of their work with patients and families
  • To help geneticists, genetic counsellors and nurses to develop their skills in identifying and resolving ethical issues
  • To provide a forum for the presentation and discussion of cases from units around the country
  • To encourage the sharing of good practice
  • To help units to develop ways of ensuring that ethical considerations inform the day to day practice of their units
  • To contribute to the improvement of ethical decision-making in practice

Who is it for?

Anyone working in the speciality of clinical genetics, as well as medical lawyers or ethicists with an interest in genetics.

Who is it run by?

The Genethics Club Steering Group is: Tara Clancy, Angus Clarke, Anneke Lucassen, and Michael Parker.

Some of the ethical issues discussed at previous Genethics Clubs

  • Adoption
  • Non-paternity
  • The relationship between clinical practice and research
  • Confidentiality
  • Health professionals’ responsibilities to family members
  • Testing of children and adolescents
  • Next of kin
  • Prenatal testing and reproductive choice
  • Preimplantation genetic diagnosis
  • The right not to know
  • What to do when it is clear that a proposed test will reveal information about a family member who does not want to know their status?
  • The implications of the Human Tissue Act - view the presentation given at this meeting

Confidentiality and case discussion at Genethics Clubs

In order for the discussions at the Genethics Club to be useful to health professionals it is important for those present to be able speak freely. This depends upon the maintaining of high standards of confidentiality. Those presenting cases are encouraged to wherever possible anonymise cases prior to presentation. Discussion of cases outside the meeting must also respect confidentiality.

Minutes of the Genethics Club are taken and are circulated to those who attended the meeting. A short version setting out the ethical issues discussed, but not the details of cases, is produced and subject to the agreement of those presenting cases, this is then sent out to the Genethics Club mailing list.

Evaluating the effectiveness of the Genethics Club

How effective and useful are the Genethics Clubs? Those who have attended the Genethics Club have completed evaluation forms. Some of their comments include:

'The discussions helped me to identify important issues I wouldn’t have considered otherwise.'

'It is a friendly forum bringing together different specialities'

'Helped me to clarify my thoughts and positions'

'The mixture of formal and informal discussion works well'

All those who completed evaluation forms have agreed that ‘it is useful to discuss ethical issues with colleagues from other centres’.

A long term evaluation of the effectiveness of the Genethics Club is currently being undertaken.

Examples of cases discussed

Misattributed paternity

A married couple in their early thirties, Polly and Richard, are referred to clinical genetics following the diagnosis of a rare autosomal recessive condition in their newborn baby. The disorder is severe and debilitating and there is a high chance that the child will die in the first year. During their first session with the genetic counsellor, Polly and Richard are informed that there is a 25% chance that a future baby would also be affected. Between the two meetings Polly telephones the unit to say that Richard is not the father of the child. She says that she does not want Richard to find out. As the mutation is rare in the population, this means that, if what Polly says is true, whilst Richard believes he and Polly have a one in four chance of an affected child, the risk is in fact negligible.

At their next counselling session Richard does most of the talking. He says that he would like to discuss alternative options for having children including artificial insemination by donor. The counsellor is unsure what is the right thing to do.

What ought to be done if the couple separate and Richard returns to the clinic with a new partner asking for reproductive advice?

 

Non-disclosure

Jim (60) has been diagnosed with Huntington’s disease (HD) which has been confirmed molecularly. There is no reported family history of HD, but several of his deceased relatives are thought to have had Alzheimer’s disease (AD). Jim himself was initially diagnosed with AD in his early 50s, but the diagnosis was reviewed following brain scans and revised to HD at the age of 57. Jim’s capacity to consent is uncertain as he has marked dementia but he has expressed a view, strongly shared with his wife Mary, that he does not want any of their four children (aged 30-37) informed of the diagnosis or of the risk to them. Jim and Mary can only see negative consequences arising out of the sharing of such information and anticipate that they will be blamed. Mary say; ‘they either have it or don’t, and we would rather they continued to think it was AD’. The couple have been advised by genetic staff that their children might in fact want to know and may want to make their own choices. Jim and Mary have also been offered help in communicating with their children, but have declined. Recently, one of the daughters was referred to the genetics team to discuss her family history of AD. The team are unsure what they should say to her when at her appointment.

How did the Genethics Club get started?

The Genethics Club was formed in November 2001 following a Wellcome Trust sponsored workshop held in Oxford. Three themes emerged from this symposium:

  • a wide range of ethical issues arise in the everyday practice of clinical genetics
  • there is a perceived need for ethics support in clinical genetics
  • members of genetics teams felt that they would benefit from discussion with colleagues in other centres about the ethical issues arising in their practice

Genethics Club was established by Mike Parker, Anneke Lucassen and Angus Clarke following this meeting to provide a national forum for the discussion of practical ethical problems encountered in the working lives of clinical genetics departments.

Do you want a Genethics Club in your area?

The Genethics Club is always on the lookout for new venues. If you would be interested in hosting a meeting in your centre or area, please let us know.

Who runs the Genethics Club?

The Genethics Club is organised by: Tara Clancy, Angus Clarke, Anneke Lucassen, and Michael Parker. If you would like to know more about the Genethics Club you can contact Michael Parker on michael.parker@ethox.ox.ac.uk