One of the distinctive features of genomic information is that it is often shared within families. When a person is diagnosed with a hereditary condition, this information may also be relevant for their relatives. Through cascade screening, also known as family-based genetic testing, relatives can be offered genetic testing to find out whether they may also be at increased risk to develop the condition. This information can help them consider preventive care, monitoring or early treatment, where appropriate.
Sharing genetic information within families can raise difficult ethical and emotional challenges. People who receive a genetic diagnosis may feel torn between protecting their own privacy and wanting to warn relatives who could benefit from knowing about a potential risk.
Some family members may want to receive this kind of information, while others may prefer not to know and wish for that choice to be respected. These differences in preferences can sometimes lead to misunderstandings, tension, or feelings of guilt or blame within families. These situations also highlight a broader tension between individual privacy and a sense of responsibility towards relatives.
There is also uncertainty about the role and responsibilities of healthcare professionals. Should they focus strictly on patient confidentiality, or do they have a duty to help ensure that relatives who may be at risk are informed?
European countries are adopting varying approaches to these questions, seeking to strike a balance between privacy, professional responsibility and public health considerations. As genomic testing becomes more common, policies and practices around cascade screening continue to evolve.
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