Genetic information: a joint account?
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《英国医生杂志》
1 Oxford Genetics Knowledge Park, Ethox Centre, University of Oxford, Oxford OX3 7LF, 2 Wessex Clinical Genetics Service, Princess Anne Hospital, Southampton SO16 5YA
Correspondence to: M Parker
Does genetic information belong to the patient from whom it was obtained or to the whole family? The way in which this unavoidable question is answered has profound implications for the future of clinical practice in genetics
Case history
At their regular team meeting, clinicians and counsellors say that they feel they have a duty of care to both sisters. But they are not sure what to do. To tell Mrs Yates would be to breach Mrs Cross's confidentiality and might undermine trust in the relationship between her and the team. On the other hand, Mrs Yates has a 1 in 12 chance (without her carrier status being confirmed) of having an affected child. (This risk is based on the fact that the condition is X linked recessive combined with the fact that there is a one third chance that the mutation in Mrs Cross was spontaneous and, hence, a two thirds chance that it was present in the sisters' mother.) A test would enable Mrs Yates to make a more informed reproductive choice. The team feels that not offering her the test would deny her access to important familial information.2
What are the options?
Should the results of genetic tests be considered personal or familial information? This decision has important implications for clinical practice. In cases where the foreseeable harms of disclosure, or of non-disclosure, are serious, the two models agree. The implications of most genetic tests used in practice are, however, unlikely to meet the standard of serious harm required for a deviation from usual practice on either model, and in such situations, the models require us to pursue opposing courses of action. In the above case, the personal account model requires us to respect Mrs Cross's confidentiality but the joint account model requires us to make the information available to clinicians, such as Mrs Yates's geneticist, for the care of other family members..
Which of these models should apply in practice? The personal account model has much to recommend it, including consistency with good practice in other areas of medicine. Nevertheless, the familial nature of genetics, combined with the fact that the two models produce differing conclusions only in cases where the harms of disclosure are not serious to either party, suggests that justice demands the routine sharing of the benefits of genetic information except in exceptional circumstances.
Changing to a joint account model is of course controversial. It would be essential to inform those using genetic services at an early stage about the way in which the information resulting from such investigations was to be used. It would also require agreement about what is to count as a sufficiently serious harm to index patients to justify non-disclosure. For any change of practice to be acceptable, the appropriate standard of harm would need to be set low. That is, there would need to be only a small risk of harm to the index patient for disclosure to be ruled out. In many cases, therefore, adoption of the joint account model would make little difference to current practice. Nevertheless, adopting this model would mean that where there were no good reasons to do otherwise—that is, in most cases, genetic information would be available for use in the care and treatment of all family members, which is currently not the case.
Summary points
Clinical geneticists often find themselves with differing responsibilities to members of the same family
Currently genetic information is considered personal, putting the emphasis on patient confidentiality
Genetic testing is usually done only after assessing family history, and the results could be viewed as belonging to the family—the joint account model
Under such a model the patient would have to be at risk of serious harm to justify not sharing information
A joint account model would extend the benefits of testing when there is no risk of serious harm to index patients or their relatives
This is the first article in an occasional series, edited by Michael Parker and Julian Savulescu, analysing ethical issues that confront health professionals in daily practice
Ethics in Practice is a bi-monthly series of case based papers, jointly written by ethicists and health professionals, examining ethical issues that confront health professionals in daily practice. The series is edited by Michael Parker, reader in medical ethics at the Ethox Centre, University of Oxford (michael.parker@ethox.ox.ac.uk) and Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics.
Contributors and sources: Michael Parker has for the past four years been running a monthly ethics discussion forum at the Oxford Regional Genetics Unit helping health professionals to explore the ethical issues arising in their day to day practice. This led to the establishment, with Anneke Lucassen, of the Genetics Club, a three times yearly national forum for members of clinical genetics teams. Both authors have written widely on ethical issues in genetics (www.genethicsclub.org).
Competing interests: None declared.
References
Rose P, Lucassen A. Practical genetics for primary care. Oxford: Oxford University Press, 1999: 134.
Parker M, Lucassen A. Concern for individuals and families in clinical genetics. J Med Ethics 2003;29: 70-4.
General Medical Council. Confidentiality: protecting and providing information. http://www.gmc-uk.org/standards/secret.htm (accessed 8 Mar 2004).
American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure. Professional disclosure of familial genetic information. Am J Hum Genet 1998;62: 474-83.
Knoppers B, Wertz DC, Chadwick R, Penchaszadeh VB, LeBris, S. Defining "serious" disorders in relation to genetic services: who should decide? Am J Hum Genet 1995;57(suppl): 296A.
Human Genetics Commission. Inside information: balancing interests in the use of personal genetic data. London: HGC, 2002: 47.
Knoppers B. Genetic information and the family. Trends Biotech 2002;20: 85-6.
Rose P. Taking a family history. In: Rose P, Lucassen A.. Practical genetics for primary care. Oxford: Oxford University Press, 1999: 57-75.(Michael Parker, reader in)
Correspondence to: M Parker
Does genetic information belong to the patient from whom it was obtained or to the whole family? The way in which this unavoidable question is answered has profound implications for the future of clinical practice in genetics
Case history
At their regular team meeting, clinicians and counsellors say that they feel they have a duty of care to both sisters. But they are not sure what to do. To tell Mrs Yates would be to breach Mrs Cross's confidentiality and might undermine trust in the relationship between her and the team. On the other hand, Mrs Yates has a 1 in 12 chance (without her carrier status being confirmed) of having an affected child. (This risk is based on the fact that the condition is X linked recessive combined with the fact that there is a one third chance that the mutation in Mrs Cross was spontaneous and, hence, a two thirds chance that it was present in the sisters' mother.) A test would enable Mrs Yates to make a more informed reproductive choice. The team feels that not offering her the test would deny her access to important familial information.2
What are the options?
Should the results of genetic tests be considered personal or familial information? This decision has important implications for clinical practice. In cases where the foreseeable harms of disclosure, or of non-disclosure, are serious, the two models agree. The implications of most genetic tests used in practice are, however, unlikely to meet the standard of serious harm required for a deviation from usual practice on either model, and in such situations, the models require us to pursue opposing courses of action. In the above case, the personal account model requires us to respect Mrs Cross's confidentiality but the joint account model requires us to make the information available to clinicians, such as Mrs Yates's geneticist, for the care of other family members..
Which of these models should apply in practice? The personal account model has much to recommend it, including consistency with good practice in other areas of medicine. Nevertheless, the familial nature of genetics, combined with the fact that the two models produce differing conclusions only in cases where the harms of disclosure are not serious to either party, suggests that justice demands the routine sharing of the benefits of genetic information except in exceptional circumstances.
Changing to a joint account model is of course controversial. It would be essential to inform those using genetic services at an early stage about the way in which the information resulting from such investigations was to be used. It would also require agreement about what is to count as a sufficiently serious harm to index patients to justify non-disclosure. For any change of practice to be acceptable, the appropriate standard of harm would need to be set low. That is, there would need to be only a small risk of harm to the index patient for disclosure to be ruled out. In many cases, therefore, adoption of the joint account model would make little difference to current practice. Nevertheless, adopting this model would mean that where there were no good reasons to do otherwise—that is, in most cases, genetic information would be available for use in the care and treatment of all family members, which is currently not the case.
Summary points
Clinical geneticists often find themselves with differing responsibilities to members of the same family
Currently genetic information is considered personal, putting the emphasis on patient confidentiality
Genetic testing is usually done only after assessing family history, and the results could be viewed as belonging to the family—the joint account model
Under such a model the patient would have to be at risk of serious harm to justify not sharing information
A joint account model would extend the benefits of testing when there is no risk of serious harm to index patients or their relatives
This is the first article in an occasional series, edited by Michael Parker and Julian Savulescu, analysing ethical issues that confront health professionals in daily practice
Ethics in Practice is a bi-monthly series of case based papers, jointly written by ethicists and health professionals, examining ethical issues that confront health professionals in daily practice. The series is edited by Michael Parker, reader in medical ethics at the Ethox Centre, University of Oxford (michael.parker@ethox.ox.ac.uk) and Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics.
Contributors and sources: Michael Parker has for the past four years been running a monthly ethics discussion forum at the Oxford Regional Genetics Unit helping health professionals to explore the ethical issues arising in their day to day practice. This led to the establishment, with Anneke Lucassen, of the Genetics Club, a three times yearly national forum for members of clinical genetics teams. Both authors have written widely on ethical issues in genetics (www.genethicsclub.org).
Competing interests: None declared.
References
Rose P, Lucassen A. Practical genetics for primary care. Oxford: Oxford University Press, 1999: 134.
Parker M, Lucassen A. Concern for individuals and families in clinical genetics. J Med Ethics 2003;29: 70-4.
General Medical Council. Confidentiality: protecting and providing information. http://www.gmc-uk.org/standards/secret.htm (accessed 8 Mar 2004).
American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure. Professional disclosure of familial genetic information. Am J Hum Genet 1998;62: 474-83.
Knoppers B, Wertz DC, Chadwick R, Penchaszadeh VB, LeBris, S. Defining "serious" disorders in relation to genetic services: who should decide? Am J Hum Genet 1995;57(suppl): 296A.
Human Genetics Commission. Inside information: balancing interests in the use of personal genetic data. London: HGC, 2002: 47.
Knoppers B. Genetic information and the family. Trends Biotech 2002;20: 85-6.
Rose P. Taking a family history. In: Rose P, Lucassen A.. Practical genetics for primary care. Oxford: Oxford University Press, 1999: 57-75.(Michael Parker, reader in)