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The Genethics Club

   

 Genethics Club

  

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.

 

When is the next Genethics Club meeting?

The 2011 and 2012 Genethics Club meetings will take place on the following dates:
    • 8th February 2012, London (Seminar Room, 7th Floor, Borough Wing, Guys Hospital, Great Maze Rd, London, SE1 9RT))
    • 11th May 2012, Leeds (Department of Clinical Genetics, Chapel Allerton Hospital)
    • 17th October 2012, London (venue to be announced)

 

If you would like to attend any of these meetings 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.

 

 

Who is it run by?

The Genethics Club Steering Group is: Tara Clancy, Angus Clarke, Sam Leonard, Anneke Lucassen, and Michael Parker. For more information about the Genethics Club contact michael.parker@ethox.ox.ac.uk

 

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

 

Selected guidelines which Genethics Club members havs been involved in developing

 

Plenary presentations

Some of the presentations made at the Genethics Club are available here : Plenary Talks at Genethics Club

 

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

 

 

(i)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?

 

(ii)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. At the bottom of this page is a list of Genethics Club meetings which have taken place along with details of the plenary presentations by invited speakers.

 

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.

 

Publications about or relating to the Genethics Club

 

    • A.M. Lucassen and M. Parker. 2001  Talking about paternity in the genetic clinic: Some ethical considerations Lancet 357 1033-5
    • Confidentiality in Genetic Testing. Parker, M.  American Journal of Bioethics (2001) Vol 1(3): 21-22.
    • M. Parker and A.M. Lucassen. Working towards ethical management of genetic testing.  Lancet. 2002 Nov 23;360(9346):1685-8.
    • M. Parker and A.M. Lucassen. Concern for families and individuals in clinical genetics J Med ethics  2003, 29 70-73
    • A.M. Lucassen and Parker M Confidentiality and serious harm in genetics –preserving the confidentiality of one patient and preventing harm to relatives  EJ Hum Genet 2004 Feb;12(2):93-7.
    • A.M. Lucassen , R Wheeler and  M Parker.  Role of next of kin in accessing health records of deceased relatives BMJ 2004 328 952-954
    • M. Parker and A.M. Lucassen. Genetic Information: a joint account? BMJ 2004 329 165-167
    • Ethical review of research into rare genetic disorders. Parker, M., Ashcroft, R., Wilkie, A., Kent, A. British Medical Journal,  2004 July  329:288-289.
    • Clarke A, Richards M, Kerzin-Storrar L, Halliday J, Young MA, Simpson SA, Featherstone K, Forrest K, A.M. Lucassen, Morrison PJ, Quarrell OW, Stewart H.  Genetic professionals' reports of nondisclosure of genetic risk information within families. Eur J Hum Genet. 2005 Mar 16; 342-350
    • R. Ashcroft, M. Parker, G.Widdershoven, M. Verkerk, and A.M.Lucassen (Eds) Case Analysis in Clinical Ethics, Cambridge University Press 2005. ISBN-13:9780521543156 
    • A.M. Lucassen , R Wheeler and  M Parker. Implications of data protection legislation for family history BMJ 2006 Feb 4;332(7536):299-301
    • A.M. Lucassen and Kaye J Genetic testing without consent - the implications of the new Human Tissue Act. J Med Eth 2006 Dec;32(12):690-2.
    • A.M. Lucassen and Parker M. The UK genethics Club. Clinical Ethics 1(4) Dec 2006, pp. 219-223(5)
    • Deliberation and moral courage: the UK Genethics Club as a case study Parker M, Politeia 2006.
    • The Best Possible Child, Parker, M. Journal of Medical Ethics 2007; 33 (5): 279-283.
    • Obiezioni etiche al ‘dovere di scegliere di avere il bambino con la migliore possibilita di Vita’, Parker, M. Bioetica, 2007, 1: 65-72.
    • Ethnography/Ethics (2007) Parker, M.  Social Science and Medicine Volume 65, pp 2248-2259. (doi:10.1016/j.socscimed.2007.08.003)
    • A.M. Lucassen Should families own genetic information? BMJ. 2007 Jul 7;335(7609):22-23.
    • G C Crawford and A M Lucassen Disclosure of genetic information within families: a case report Clinical Ethics, March 2008; 3: 7 - 10.
    • Lucassen A.M. Ethical issues in genetic medicine InnovAiT, Vol. 1, No. 8, pp. 589 – 595, 2008
    • Crawford G, Lucassen A. Predictive genetic testing in a young child: a case report. Fam Cancer. 2009 Aug 12. PubMed PMID: 19672699.
    • Lucassen A. Ethicolegal aspects of genetics in surgical practice. Ann R Coll Surg Engl. 2009 Sep;91(6):451-5. PubMed PMID: 19723417
    • Lucassen A, Montgomery J. Predictive genetic testing in children: where are wenow? An overview and a UK perspective. Fam Cancer. 2009 Oct 20. PubMed PMID: 19842063.
    • Lucassen A, Hill C, Wheeler R. 'Ethnicity testing' before adoption; a help or hindrance? Arch Dis Child. 2009 Oct 8. PubMed PMID:19815936.
    • Genetic Testing in Children and Young People (2009) Parker, M. Familial Cancer
    • Distinguishing research from clinical care in cancer genetics: theoretical justifications and practical strategies (2009) Hallowell, N., Cooke, S., Crawford, G., Lucassen, A. Parker, M. Social Science and Medicine 68: 2010-2017.
    • Lucassen AM Ethical issues in Cancer Genetics. In: A guide to cancer genetics in clinical practice. Ed S Clarke Bios. Tfm Publishing; 1 edition (2009) ISBN-10: 1903378540
    • An Ordinary Chance of a Desirable Existence (2010), Parker, M. in Archard, D. and Benatar, D. Procreative Parenthood, Oxford:Oxford University Press
    • Ethical Problems and Genetics Practice (2012), Parker, M. Cambridge: Cambridge UniversityPress

 

Previous Genethics Club Meetings

    • Oxford 5th November 2001- Wellcome Trust sponsored meeting to discuss need for ethical deliberation within clinical genetics
    • Cardiff 10th June 2002 Inaugural Genethics Club meeting.
    • London- Regent’s College; 12th December 2002
    • Birmingham, Wednesday 21st May 2003 Plenary Speaker; Dr David Crauford "Ethical guidelines for HD predictive testing: do we still need them?"
    • London, Institute of Child Health, Tuesday 21st October 2003 Plenary Speaker; Dr Graeme Laurie "Genetic Privacy"
    • London 26th February 2004 Institute of Child Health Plenary: Mike Parker “Ways of thinking about ethics”
    • Manchester, Tuesday 13th  July 2004 Plenary Speaker; Prof. Margaret Brazier “patients' responsibilities”
    • London, Guys Hospital Clinical genetics department Wednesday 13th  October 2004. Plenary Session; “Adoption and Genetics” Chris Barnes and colleagues
    • London, Regents Park College Tuesday 1st February 2005.  Plenary: Dr John Wyatt, Neonatologist University college Hospital  “Fetal viability and late termination”
    • Newcastle upon Tyne  Friday 8th July 2005 10.30-4pm Dr Brian Lunn: ‘Assessment of capacity in adults’
    • London, Regents Park College Tuesday 3rd November 2005 Plenary:  “Electronic hospital records and their application in Clinical Genetics- the ethical issues” Tara Clancy, Mike Parker and Anneke Lucassen
    • Leicester, Venue: Centre for Deaf People Tuesday 7th February 2006 Plenary; “Contacting relatives directly” Tara Clancy, Mike Parker and Anneke Lucassen
    • London Tuesday 4th July 2006 Regents Park College Plenary; The Human Tissue Act 2004. Professor Peter Furness
    • London Venue: ABPI:Tuesday 31st October 2006 Plenary Session; “Resource Allocation” Jacquie Westwood  Director of Specialised Services SE
    • London Roben’s Suite Guys Hospital Wednesday 7th February 2007, Plenary:  "Ethical Challenges and the New Technologies of Reproduction". Professor Brenda Almond
    • June 2007 London. Regent's College, Regent's Park. Discussion of cases
    • Southampton Tuesday 9th October 2007 Plenary: “Are my genes mine? Genetic information and the idea of ownership” Professor Jonathan Montgomery
    • London Regents Park College Wednesday 30th January 2008 Plenary: “The interface between research and clinical practice in genetic medicine” feedback from the ROCC (research or clinical care?) stud. Nina Hallowell, Gillian Crawford, Mike Parker, Anneke Lucassen
    • Edinburgh Monday 30th June 2008 Plenary: ‘To disclose or not to disclose’ Legal and ethical limits to the duty of  disclosure in genetic medicine” Professor Graeme Laurie
    • London Monday 13th October 2008. Wellcome Trust Building, Euston Road Plenary: “Narrative strategies in ethics and how this may help in the analysis of clinical genetics cases” Professor Brian Hurwitz
    • London , Wellcome Collection Building, Wellcome Trust 13th February 2009- Plenary “Summary of genethics club cases in the first 21 meetings” Professor Mike Parker
    • Bristol -Centre for Ethics in Medicine, 6th July 2009. Plenary: “Genetics, ethics and the media”. Ken Rees
    • London Guys Hospital 10th Nov 09. Plenary: “GMC Guidelines and confidentiality” Mike Parker Anneke Lucassen Tara Clancy and Angus Clarke
    • London, Regents College, 25th June 2010
    • Oxford, Wolfson College, 18th November 2010
    • Manchester, NOWGEN Centre, 30th March 2011
    • Cardiff, Glamorgan Building, Cathays Park, 20th July 2011
    • London, Regent's College,17th November 2011 
    • London, 8th February 2012
    • Leeds, 11th May 2012
    • London, 17th October 2012