Legal duty to share genetic information goes to trial
17th May 2017
Excerpt from blog:
Following on from our previous blog on the legal duty to share genetic information, we are excited to see that the Court of Appeal announced yesterday that a trial will go ahead. In summary, the daughter of a man with Huntington’s Disease is suing the hospital caring for her father, claiming that the hospital had a duty of care to share the father’s HD diagnosis with her, against her father’s wishes, so that she could seek out her own genetic testing (and potentially have a termination of pregnancy).
Yesterday’s announcement allows the case to be remitted for trial and will likely involve leaders from the genetics world being called as witnesses. Here, the practice of Clinical Genetics in the UK will have its moment in the legal spotlight. Of particular interest is the application of existing professional recommendations on when it is acceptable to breach a person’s confidentiality and share their genetic information with relatives. The encourgaement to share genetic information within the family, and actually sharing information even against a persons wishes (in very special circumstances and when it is practical to do so) has been happening within clinical genetics practice for many years. Take for example an individual with an inherited form of young onset bowel cancer. If they refuse to tell their family that they are at risk from also having the same disease, then such relatives will not be able to access genetic testing nor bowel cancer screening, which could potentially save their lives.