Practical ethics - consent, confidentiality and disclosure

Author: C. Patch
Submitted: Tuesday 26th of June 2012 02:46:25 PM
Submitted by: egf
Language: English
Content type: Learning resource
Educational levels: expert, qc2, qc3



Principles regarding consent for procedures and protecting the confidentiality of medical information are enshrined in codes governing ethical practice. They are also subject to statutory oversight which may vary according to the area of administration. It can be argued that medical genetics is no different from other medical specialties. However the practice of clinical genetics may give rise to situations where issues of consent and confidentiality do require special consideration. In relation to consent for procedures the key aspects are that i) the person understands the nature and risks of the procedure to which they are consenting and ii) that the person gives consent without coercion. In this session we will consider cases where there may be special issues relating to consent and confidentiality. The text below is adapted from ‘Applied genetics in health care’. In genetic healthcare settings, consent most often relates to: 1.Taking a family history Consent can generally be assumed if the proband provides the information requested, providing that the process and reason for taking the pedigree have been explained. However, when using the pedigree to counsel other family members, the confidentiality of the original proband must be respected. For this reason, it may be appropriate to take a new pedigree when seeing a different branch of the family. 2. Obtaining specific medical history from the proband and/or other relatives It is frequently necessary to request medical notes on the proband in order to advise him or her properly, consent must be sought to view or request medical records. The purpose of viewing records of other family members must be explained to them and written consent obtained. 3. Obtaining blood or tissue samples. Permission to take a sample must be explicitly given by the client. This is sometimes written consent, but if the procedure has been explained the co-operation of the client in giving the sample is usually deemed to be evidence of consent. For example, if a client lifts his sleeve and presents his arm after being asked to consent to a blood sample, this would be evidence that the client has given consent. 4. Performing genetic tests The exact nature of the tests and the implications of the result must be explained to the client . It is good practice to give the client written information as well as a verbal explanation, and written evidence of consent must be recorded. Risks associated with genetic testing might include the discovery of false paternity, this should be mentioned if a possibility. Other aspects of consent for genetic tests include whether consent is given for the sample to be stored and the possible outcomes of the test. Separate consent should be obtained for use of the sample in research and to share the results with relatives in the process of their own testing. Confidentiality Confidentiality of personal information is a basic tenet of healthcare and is considered so important to the rights of the client that it is enshrined by law in many countries. However, there may be provision under some statutes for the healthcare professional to disclose the client’s confidential medical information, if not disclosing would result in serious but avoidable harm to others. This is the case in UK law. A good example covered in law would be where a person had a serious infectious disease that was putting others in the community at risk. In a genetic healthcare setting, the situation may be complex, as the information about the genetic structure of one individual may (and often does) have implications for other family members. Where this occurs, the proband is usually encouraged to share the information with relatives who may be affected, especially if screening or treatment is available that would reduce the health risk. It is usual to offer support in the form of written information that can be given to relatives and contact details so that they can seek more information and guidance from the genetics team if they wish. When an individual refuses to share information with relatives, there is always an underlying reason that might not be obvious to the practitioner. The situation is rarely urgent, and effort spent in gaining the proband’s confidence and allowing time for psychological adjustment to their status can often be helpful in enabling the proband to share the information. However, this is not always the case and then the decision about whether to break confidentiality may arise. Resources: American Medical Association statement on informed consent (accessed 5th April 2012) Joint Committee on Medical Genetics Consent and confidentiality in genetic practice: Guidance on genetic testing and sharing genetic information. A report of the Joint Committee on Medical Genetics 2nd edition 2011 (accessed 5th April 2012) Human Genetics Commission Inside information 2002 Department of Health UK Chapter 4 of this report concentrates on consent and confidentiality as they relate to medical genetics. (accessed 5th April 2012) Lucassen A, Parker M Confidentiality and sharing genetic information with relatives. The Lancet, 375 (9725), 1507 - 1509 Skirton H, Patch C and Williams J (2005) Applied Genetics in Health Care. Taylor Francis. Abingdon 2005 United States Department of Health and Human Services. Office for Civil Rights- HIPPA. Medical Privacy – National standards to protect the privacy of personal health information (accessed 5th Aril 2012)


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Original version - English

abstract Patch_Practical_Aspects_of_Consent_Confidentiality_and_Disclosure2012_5192.pdf

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C. Patch. Practical ethics - consent, confidentiality and disclosure. EUROGENE portal. June 2012. online:



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