Confidentiality regarding a patient’s condition has been a time-tested precept of medical ethics governing a patient-doctor relationship. What a patient confides in his or her doctor is strictly a matter between the two, as a lot of that information could have a significant adverse effect on the patient’s legal, occupational, social, and personal standing. However, at times, medical ethics have to differentiate between the necessities of considering the ‘greater good of the community versus the individual. Michael Parker and Anneke Lucassen (2004) through their article ” Genetic Information: A Joint Account?” argue that this is especially the case in the field of genetics where information regarding a patient may possibly be shared conflicting with the norms of confidentiality as is applicable to other fields of medical science. This essay attempts to explain the arguments of the authors and ascertain the validity of their hypothesis.
Parker and Lucassen state that the issue of genetic information of a patient can be viewed through two aspects; Firstly by considering the genetic information of the patient as a ‘Personal Account’ or secondly, to consider the same information as a ‘Joint Account’. To illustrate their argument, the authors describe a case of Mrs. Cross who had a four-year-old son diagnosed with Duchenne’s muscular dystrophy in which the mother was identified as the carrier of the mutated gene responsible for the condition in her son. The mother’s sister, Mrs. Yates was ten months pregnant and had confided in her doctor that her nephew had the condition and she was worried whether her newborn would be similarly affected. She also confided that she would consider terminating the pregnancy should it be confirmed that her “fetus was affected with a serious inherited condition” (Parker and Lucassen, p.165). Mrs. Cross, on the other hand, had strong ‘pro-life’ beliefs and did not want her and her son’s genetic information being shared with her sister, Mrs. Yates as it could result in termination of the pregnancy.
The authors explain that as per the existing norms of patient confidentiality, Mrs. Cross’s doctor could construe the request as valid. According to them a ‘Personal Account model’ dictates that it may be difficult to morally accept “for a clinician to breach a patient’s confidentiality in the interests of other” (Parker and Lucassen,p.166). According to Parker and Lucassen, “the most important ethical justification underpinning respect for confidentiality arises out of respect for the patient’s choice” (p.166). The other important consideration is that should a breach of confidentiality be attempted, the patient may lose trust in her doctor and as a wider implication; the medical fraternity may lose the trust of their patients if it became known that patient confidentiality is being breached. The personal account-model also has the advantage of being in line with the accepted ethical norms of the medical profession.
The Joint Account model on the other hand argues that genetic information is analogous to a joint bank account. The genetic information of Mrs. Cross and her son cannot be considered as unique to them as the same genes or almost the same genes would have been passed on to Mrs. Yates. In the case of a joint bank account, all parties are fully aware of what the other members are doing. In the same way, sharing genetic information within a family holds validity. According to Parker and Lucassen “perhaps the strongest ethical principle in favor of the joint account model is that of justice, or perhaps reciprocity. Genetic information is essentially and unavoidably familial in nature. “It is this feature of genetics that allows individuals to benefit from genetic testing and diagnosis”(Parker & Lucassen, p.166). When a patient consults a genetic clinician, the entire family genetic history is required for the diagnosis and therefore there should be no reason why only one family member should benefit from the information and the other be denied the same information on the grounds of confidentiality. “The current application of the personal account model, and strict confidentiality, means that many potential benefits of genetic testing are untapped” (Parker and Lucassen, p.166). It would deny entire families from learning about their disabilities or possibly denying them correct medical care. The other implications are that should knowledge of such practices become known to the patients, it may lead to erosion of faith in genetic clinics and possible legal actions. Another advantage of the Joint Account model is that genetic clinics usually work with complete families and develop a familial responsibility for the whole group, thus there is no serious disadvantage to a single member of the family under treatment.
The decision to choose either the Personal Account model or the Joint account model can best be taken on a case-to-case basis. The aspect of patient confidentiality should not become the overriding factor in denying the sharing of genetic information. It may well be prudent to first consider whether the sharing of such information will cause serious harm to the patient’s interest. If no serious harm is judged to have taken place, then the sharing of genetic information for the ‘greater good of the larger population set, which in this extant case included the patient’s own family should be considered as the right decision. The Joint account model for sharing genetic information seems to align better with the principles of justice and reciprocity.
Works Cited
Parker, Michael & Lucassen, Anneke. 2004. Genetic information: a Joint Account?British Medical Journal, 329(7458), pp. 165-167, 2008. Web.