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UK Report Offers Clinicians Guidance on Genetics Consent Issues

NEW YORK (GenomeWeb News) – Three UK medical groups have released a new set of recommendations to provide guidance for healthcare professionals on how to best handle the ethical and legal issues brought about by new clinical genetic testing technologies.

Included in the report from the Royal College of Physicians, the Royal College of Pathologists, and the British Society for Human Genetics are recommendations covering patient consent and confidentiality related to clinical genetics practice, family history and clinical information, and how patients should be informed about how the samples they provide may be used in research.

The report is aimed at guiding healthcare professionals through "the complex mix of legislation that applied to the use of genetic data and samples," and uses real cases as illustrations for how these issues should be handled in clinical practice, RCP said yesterday.

The recommendations place a particular emphasis on how genetic tests are becoming more pervasive in hospitals and clinics and spotlights measures for communicating the value and risks of genetic information for patients' family members.

"Patients are content to undergo tests and to entrust confidential information to professionals in order to ensure that they get sound advice and treatment," Alison Hall, project manager in law and policy at the UK's Foundation for Genomics and Population Health (PHG Foundation), said in a statement. "The distinguishing feature in clinical genetics is that much of this information affects not only the individual patient but also other family members."

The report proposes three central recommendations:

• Family history and clinical information should be shared if it is relevant to the healthcare needs of family members, and healthcare professionals should share relevant information with each other in ways that do not breach their confidentiality obligations.

• Healthcare professionals should inform patients about what happens to their samples and genetic information, including explaining that their samples may be important in quality control of other tests and that their results may be incorporated into national data sets that will be used for developing evidence-based care.

• Because medical interventions can modify some genetic diagnoses, patients' relatives should be made aware of their genetic risks by communication directly through the patient, through the general practitioner, or through a genetic service.

The report specifically addresses these issues of balancing the interests of patients and relatives within the context of UK laws, including the Data Protection Act of 1998 and the Human Tissue Act of 2004.

The guidance also includes a list of topics that should be discussed as part of the consent process for genetic testing, including the potential benefits of genetic investigation for close relatives; the fact that certain aspects of genetic information should be communicated to family members; and the possibility that genetic tests may result in uncertain or unexpected findings, and how these might be managed.

Patient consent in relation to genetic tests is only valid if their implications are disclosed and understood, but the complexity of genetic information "poses a particular challenge in clinical genetic practice," and poses important questions, the report's authors said.

Genetic information also stirs concerns about discrimination or stigmatization, and although it may be important for patients' relatives, patients may not want others to know about their genetic makeup, the authors pointed out.

"Most patients attend genetic services at least in part to help their family members, but concern about consent and confidentiality means that many health care professionals are uncertain what they can or cannot disclose to family members," Anneke Lucassen, professor of clinical genetics at the University of Southampton, said in a statement. "The guidelines make this more explicit and provide useful flow-charts and consent forms to record the wishes of the patient."

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