adult version of ALD. This diagnosis would have been disclosed, facilitating screening of the wider family, prompting earlier diagnosis and potentially better outcomes for the claimants. A conundrum is posed by genetic information. Parents impart genes the – fundamental unit of hereditary to their children. Consequentially, descendants from – a common gene pool share a percentage of their genetic heritage, which can include deleterious genetic traits. Thus genes can promulgate through generations of ‘faulty’ a family, though it is important to recognise genetic information it is not a unitary class of information. This shared heritage is significant when an individual undergoes genetic testing. A results simultaneously reveal information about them and person’s their family. For example, if a patient possesses BRCA1 gene mutation increasing – their risk of breast cancer by 50-80 per cent the chance of their parents, siblings and – children also possessing the mutation is one in two. disease likewise Huntington’s has a one in two chance of transmission and is almost 100 per cent penetrant; ALD is an X-linked disorder, also with a one in two chance of transmission. The presence of a deleterious gene in a patient is therefore indicative of the prospective health of blood relations. A clinician possessing genetic information is thus aware of risks pertinent to both their patient and that family. The patient’s question is: how should this information be treated? A paradigm of confidentiality is problematic; confidentiality is traditionally premised on information being relevant only to the patient, which is categorically not true of genetic information. Confidentiality is not absolute, a breach can be justifiable if it is in the public interest, but the traditional paradigm does not recognise interests in genetic relatives’ information. It is argued these deserve recognition and an appropriate way of doing so is a common law duty to disclose. The High Court in and resisted attempts to use negligence to ABC Smith protect familial interests in genetic information, striking out both claims and confirming commentators predictions that only a exists of English law ‘slim chance’ imposing a duty to disclose. This resistance is an opportunity missed. With ABC scheduled for substantive appeal in March 2017, the Court of Appeal has an opportunity to accept the application and allow full consideration of a duty claimant’s to disclose at trial. The position of blood relations is an important issue with genetic testing increasingly part of mainstream healthcare and further incorporation of genomic medicine within the NHS inevitable. Increasingly inexpensive methods of
adult version of ALD. This diagnosis would have been disclosed, facilitating screening of the wider family, prompting earlier diagnosis and potentially better outcomes for the claimants. A conundrum is posed by genetic information. Parents impart genes – the fundamental unit of hereditary – to their children. Consequentially, descendants from a common gene pool share a percentage of their genetic heritage, which can include deleterious genetic traits. Thus ‘faulty’ genes can promulgate through generations of a family, though it is important to recognise genetic information it is not a unitary class of information. This shared heritage is significant when an individual undergoes genetic testing. A person’s results simultaneously reveal information about them and their family. For example, if a patient possesses BRCA1 gene mutation – increasing their risk of breast cancer by 50-80 per cent – the chance of their parents, siblings and children also possessing the mutation is one in two. Huntington’s disease likewise has a one in two chance of transmission and is almost 100 per cent penetrant; ALD is an X-linked disorder, also with a one in two chance of transmission. The presence of a deleterious gene in a patient is therefore indicative of the prospective health of blood relations. A clinician possessing genetic information is thus aware of risks pertinent to both their patient and that patient’s family. The question is: how should this information be treated? A paradigm of confidentiality is problematic; confidentiality is traditionally premised on information being relevant only to the patient, which is categorically not true of genetic information. Confidentiality is not absolute, a breach can be justifiable if it is in the public interest, but the traditional paradigm does not recognise relatives’ interests in genetic information. It is argued these deserve recognition and an appropriate way of doing so is a common law duty to disclose. The High Court in ABC and Smith resisted attempts to use negligence to protect familial interests in genetic information, striking out both claims and confirming commentators predictions that only a ‘slim chance’ exists of English law imposing a duty to disclose. This resistance is an opportunity missed. With ABC scheduled for substantive appeal in March 2017, the Court of Appeal has an opportunity to accept the claimant’s application and allow full consideration of a duty to disclose at trial. The position of blood relations is an important issue with genetic testing increasingly part of mainstream healthcare and further incorporation of genomic medicine within the NHS inevitable. Increasingly inexpensive methods of
Genetic%20Risks%20and%20A%20Duty%20to%20Disclose%20Med%20Law%20Int.docx