Genetic information: a joint account?BMJ 2004; 329 doi: https://doi.org/10.1136/bmj.329.7458.165 (Published 15 July 2004) Cite this as: BMJ 2004;329:165
All rapid responses
Parker and Lucassen(1) ask whether genetic information should
be considered as a “personal account,” consistent with current
good clinical practice on consent and disclosure,(2) or as a “joint
account,” where “it is assumed that information should be
available to all account holders unless there are good reasons to
do otherwise.” I propose 3 reasons why we should stick with the
“personal account” model.
The first is “First do no harm.” In the authors' joint account
the key issue stopping automatic disclosure is whether it would be
likely to cause foreseeable serious harm to the patient. It seems
foreseeable that breaking confidentiality against a patient's
express wishes could cause serious psychological harm, and
harm to doctor-patient and family relationships. I suggest that
disclosure against consent is more likely to cause a “widespread
crisis of trust in the clinical genetics service” than withholding
information at patients' requests.
The second is the analogy of Schroedinger's cat,(3) which may or
may not have been alive or dead until the box containing it was
opened and the cat's state was observed. Parker's and
Lucassen's argument for the “joint account” model is based on
genetic information being shared by more than one person. We
do not know whether the information is shared or not until
disclosure has happened and the required second genetic test is
done (the box is opened), so cannot argue beforehand that
disclosure should occur on grounds of shared information.
The third is informed consent. If genetics services disclose
information against patients' wishes, they should explain this both
before testing the patient and before obtaining a family tree. If in
the authors' example, the implications of having the test and how
her relatives might use it in making reproductive decisions had
been clearly explained the patient may have chosen not to have
the test, or to have avoided making her living relatives identifiable.
Pandora's box springs to mind in both cases.(4) Either possibility
is going to make the work of a genetics service difficult.
Finally, other doctors also treat families, not least many GPs. I
imagine many circumstances where patients being prepared to
share information with their family could make the doctor's life
much easier, but they respect the patient's right to confidentiality.
Can we really sustain one ethical conclusion in genetics and the
opposite in the rest of medicine?
1. Parker M; Lucassen AM. Genetic information: a joint account?
2. Confidentiality: Protecting and Providing Information. GMC.
April 2004. http://www.gmc-uk.org/standards/secrets.htm,
accessed 27 August 2004.
3. Schroedinger E. Die gegenwartige Situation in der
Quantenmechanik. Naturwissenschaften 1935;23:807-812, 823-
823, 844-849. English translation: Trimmer JD. Proceedings of
the American Philosophical Society, 1980;124:323-38. Reprinted
in Quantum Theory and Measurement 1983:152. Cited in Budnik
P. Measurement in quantum mechanics FAQ: Schroedinger's cat.
http://www.mtnmath.com/faq/meas-qm-3.html, accessed 27 August
4. The Legend of Prometheus and Pandora's Box. http://
Prometheus.html, accessed 27 August 2004.
Competing interests: No competing interests
Genetics is a developing branch of medical sciences and it has
multiple implications including epidemiological, etiological,
phenomenological, diagnostic, therapeutic, prognosis and outcome, and
ethical. From ethical perspective, the authors of this review  pondered
immaculately on two banking concepts-personal and joint account and their
utility in understanding the ethical issues underlying genetic information
and its sharing among family members.
Let us simplify the issue. One person in the family opens a personal
account in the bank because he does not want to share his financial
secrets with other family members. This model if applied to genetic
information, which must not be shared by any family members. But if he
wishes or gives permission to bank officials to share his bank secrets
with his family members, it is absolutely fine, which evokes functioning
similar to a joint account model. Say, from the very beginning if family
members agree to open a joint account, members in whose names bank account
is opened would have access to all banking information. In this model, the
genetic information must be shared by all family members.
Probably, the core issue is to obtain a written consent for
intercrossing genetic information from one model to another in order not
to breach the confidentiality and also protecting family member(s) from
harms and at the same time not depriving them of potential benefits.
1. Michael Parker and Anneke M Lucassen. Genetic information: a joint
account? BMJ 2004; 329: 165-167
Competing interests: No competing interests
Genetics service is still in embryonic stage, if this discussion is a
guide. The hypothetical creates the impression that genetics is primarily
about doing the tests, and then working through the consequences.
The first test result, on the son of Helen Cross, had no bearing on
the management of his disease. It could point to the need to test his
mother. Knowledge of her Duchenne gene status had no effect on any disease
present in her, either. The result of the test could change her mind about
having more children. That was the most relevant outcome of this sequence
of testing. Did it happen? We do not know, it was not mentioned.
A mature service would start with the nature of the contract between
the subject and the service. If the subject was paying full fee*, then she
would be more entitled to withhold knowledge of the results. (Unless she
is negotiating with an insurance broker, where it seems that an enduring
financial relationship takes precedence over any ethical concerns she may
have for siblings.)
A mature service would allow plenty of time after first consideration of
the need for the test, for the subject to be educated and informed, and to
reflect on possible actions and outcomes. For her to have "thought long
and hard about the issues" only after the test is done, is an admission of
failure of primary responsibilities.
A mature service, performed by the State without cost to the subject,
would make determined attempts to document and verify familial
relationships of the subject. Relying on the subject to provide verbal
'evidence' about another person who is not present, in a situation where
conflicts of interest may arise, would seem to be hazardous. (In a legal
confrontation, where evidence to support loss of a driving licence is
being considered, such hearsay would be challenged vigorously.)
A mature agency would have arms-length contact with the testing facility.
After all, the business of laboratories is to do tests. In this era of
patented genetic tests, and enforcement of international trading policies,
we should see more attention given to the financial links between all
parties involved in genetic testing.
One could make a good case for telling subjects that they cannot have
genetic tests done on the NHS unless their blood relatives are properly
informed. This approach would shift demand for funding to education and
counselling, away from laboratories. In the present example, an authorised
intermediary should have something to say about Cross's reproductive
activities. (eg., as in Tay-Sachs, Thalassaemia) The role of the State, in
this situation, could be extended to advice about smoking and weight
control, since the argument is as much about allocation of resources, as
This is another example where fine communitarian concerns should hold
sway, but the corrupting forces of free market ideology, and the excesses
of individualism, have to be brought under control, first. It is fairly
easy to drum up anxieties about single disease entities, by focussing on
them with the intensity provided by marketing tools. In discussion of
something as dramatic as Duchenne, it is natural to want to exclude other
factors that will impose on longevity, quality of life and relationships,
for the sake of the "message". Life is not so simple. Families are more
complicated than dots on a genealogy map.
Doctors who act as de facto salespersons, by recommending tests and
prescribing medicines, enter the moral hazard zone. It is one thing when
the consultation is restricted to the immediate patient. In genetics,
where the interests of others become part of the equation, it seems we are
writing the rules as we go. There is evidence that the force of marketing
is a dominant persuader, certainly for pharmaceuticals, and emergent for
genetics testing. Genetics projects ( http://haemscreen.com/Home.html )
are testing the market.
[This is personal opinion only, not meant to represent my employer.
Southern Health, a provider of genetic tests, exposed its employees to
* A series of pop-up advertisements accompanied the web version of
this article on my Mozilla browser. Two of them were selling do-it-
yourself collections for relationship testing. For fees of up to several
hundred dollars, your confidentiality was assured. Another ad, from
medifocus.com, alerted the reader to a guidebook on Hemochromatosis.
Somewhere in that company's literature, there may be a warning about the
linkage of C282Y to paternity.
Competing interests: No competing interests