Case study: Genetic disclosure

...Genetic testing has revealed a chromosomal abnormality which could lead to serious health effects in her family, but Mrs R is estranged from her children and refuses to inform them....

BACKGROUND

A clinical oncologist – Dr G – emails MDDUS for advice. Genetic testing on a patient – Mrs R – has revealed a chromosomal abnormality which could lead to serious health effects in her family members. There are treatment options available for the genetic condition.

However, Mrs R is estranged from her children and has refused to inform them. Dr G has contact details for the GP of one of her daughters and would like to confirm that it would be okay – in terms of patient confidentiality – for her to contact the practice regarding the genetic test results. She feels other family members should know, including potential grandchildren.

ANALYSIS/OUTCOME

An MDDUS adviser directs Dr G to GMC guidance on Confidentiality, which provides specific information in paragraphs 73 to 76 in regard to disclosing genetic information. This points out that most patients will readily share information about their own health with their children and other relatives, particularly if they are told it might help to get prophylaxis or other preventative treatments or interventions, make use of increased surveillance or other investigations, and prepare for potential health problems.

It states (paragraph 75):

“If a patient refuses to consent to information being disclosed that would benefit others, disclosure might still be justified in the public interest if failure to disclose the information leaves others at risk of death or serious harm (see paragraphs 63 - 70). If a patient refuses consent to disclosure, you will need to balance your duty to make the care of your patient your first concern against your duty to help protect the other person from serious harm.”

The MDDUS adviser suggests it would be appropriate in this case to inform the daughter’s GP of the test results. Although there is no need to ask for consent once the decision to disclose in the public interest has been made, Dr G is reminded that it is good practice to tell the patient of her intention to write to the GP (unless it is considered not safe or practicable to do so). The adviser also reminds Dr G to document the reasons for disclosing the information without consent in the medical records.

It will then be a matter for the GP to consider if the risk of serious harm to other relatives justifies disclosure.

Such decisions should be considered on a case-by-case basis, and we would encourage members to seek support from the MDDUS.

KEY POINTS

  • Disclosure of personal information without consent can be justified in the public interest if the failure to disclose leaves others at risk of death or serious harm.
  • Record clearly in the patient notes justification for disclosure decisions.
  • Seek advice from MDDUS in such cases.

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