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Rapid Responses: Rapid Responses published:
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Consent issues
- susanne mccabe (15 October 2004)
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Re: Consent issues
- Harold A. Maio (20 October 2004)
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Consent Issues
- Fiona M Woollard (21 October 2004)
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susanne mccabe, retired cf 24 3pf
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Remember there are advocates and organisations which represent the interests of people who may not be able to give informed consent. Gaining this is an integral part of any good research - as well as being morally necessary it provides checks on what is written up. It is important therefore that researchers should be carefully not to write off people's rights too easily or rely too heavily on the opinions of other researchers or others with publishing interests. Competing interests: None declared |
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Harold A. Maio, Consulting Editor, Psychiatric Rehabilitation Journal my home, 8955 Forest St Ft Myers FL 33907
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"Imagine I wished to publish a case involving a traceable adult with learning disability who had requested genetic counselling. Turning to the guidelines, I would be required to obtain her consent before publication." So, the individual is capable of requesting genetic counseling, a fairly sophisticated request, but not capable of consenting to publishing, a far less sophisticated interaction? I sense a contradiction, a not unusual one: A person is capable of consent, when in agreement with the person seeking consent, and not capable of consent, when a disagreement might occur? Harold A. Maio khmaio@earthlink.net Competing interests: None declared |
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Fiona M Woollard, Personal Assistant YO24 1EP
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Harold Maio’s response highlighted a point which I was going to raise about genetic counselling and learning difficulties. The request of genetic counselling usually doesn’t come with just a case of learning difficulties, often more complex reasons i.e. a birth of a child with complex disabilities, several cases of SIDS etc, chronic illnesses etc and a possible diagnosis/risk etc for future pregnancies. In our case, the possible diagnosis was not discussed with us without consenting to the withdrawal of blood but there was very definitely something wrong with my son with multiple disabiliites. Had I known the possible diagnosis prior to the withdrawal (done at the same time with little discussion), I would have not consented. Consenting to genetic counselling also carries a risk of being labelled. For instance, my diagnosis carries with it a large propensity of learning/ psychiatric difficulties. I have a degree! I admit that I am different to my extremely intelligent siblings. I don’t have learning difficulties or psychiatric problems. Mine are completely different problems – there is a very wide spectrum – rather like comparing apples with oranges. But a paediatrician who had met me briefly that I had certain phenotypes that I don’t have – she was not my doctor nor had any access to my notes! I certainly don’t have a communication problem – and wouldn’t work for the people that I do and have done previously! There are a number of people whom I know would fit into your category and frankly I am appalled that you take such a view that people with learning difficulties are not competent at giving consent. What right then have you to decide whether or not someone has a learning disability and incapable of consent? His/her relatives may be perfectly capable of giving that consent. Moral of the story – don’t make judgements about a genetic disposition! Secondly the reference “using cases with practical obstacles to obtaining consent can often be justified by an appeal to public interest arguments, such as the public's right to know what clinical and ethical dilemmas doctors face” I would also like to refer here to Smith et al’s letter to the BMJ in April 2002 “Vexatious Complaints against doctors”. What right had these doctors to publish these cases? I know at least one of those mothers and the eventual diagnosis. I am fairly sure that consent would not have been given! In some cases, I also know what the missing notes were (which were important), the removal of accusations, the eventual diagnosis and also having had to endure their complaints procedure. An apology should have been given. These children were ill. Their persistent refusal to apologize led these mothers to complain to the GMC. References 1, Smith RA et al Vexatious Complaints to Doctors BMJ 2002; 324:852 (6 April) http://bmj.bmjjournals.com/cgi/content/extract/324/7341/852? maxtoshow=&HITS=10&hits=10&RESULTFORMAT=1&author1=Smith%252C+ RA&andorexacttitle=and&andorexacttitleabs=and&andorexactfulltext=and&s earchid=1098302410515_26954&stored_search=&FIRSTINDEX=0&sortspe Competing interests: None declared |
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