Genetics clinics may in future be able to do more to help patients notify their relatives about their risk of inheriting serious genetic conditions, Dr Samantha Leonard, a Specialist Registrar in the Clinical Genetics Department at St Michael's Hospital, told delegates at the BSHG annual conference today. It is sometimes difficult for patients to bear the responsibility of notifying family members alone, when practical, emotional or psychological barriers may prevent them from doing so, running the risk of relatives developing a serious genetic disorder which could otherwise have been prevented.
'When someone is found to be at high-risk from developing a serious genetic condition, hereditary breast cancer for example, this information can have important implications for other members of the family, who may be able to reduce their risk of developing the condition, for example by having regular screening. But family members sometimes don't find out they have inherited the gene mutation until they develop the condition, because patients may feel reluctant to share this information with other family members, perhaps because they don't know them very well or feel insecure about explaining complex genetic information,' explains Leonard. 'However, other factors also need to be considered, such as potential distress caused to relatives by finding out they are at risk of developing a genetic condition.'
At present, clinicians are not legally obliged to ensure that individuals who are not their patients are informed about their risk of inheriting a genetic mutation, present in the family. But it can be argued that having the involvement of the clinical team in this process removes the burden on the patient of having to approach relatives to explain often complex concepts of genetic information and treatment and ensures that the information passed on to relatives is accurate and efficient.
'While I agree that having a legal obligation to share genetic information would neither be practical nor desirable, I believe that we may be able to support patients at this time by recognizing and offering help with overcoming some of the barriers which may discourage them from sharing genetic risk information,' says Leonard.
Leonard feels that it would be helpful to look at current practice in genetics departments across the UK and investigate whether taking a more proactive role in helping patients to contact their at-risk relatives would be practically and ethically justifiable.
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Call over genetic conditions risk
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