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When you have a serious hereditary disease, who has a right to know?

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  1. Cuspist Link
    There is a lot of talk these days around the privacy/ownership of genetic information, particularly concerning direct consumer testing from 23andme et al., and 3rd parties who they may share your...

    There is a lot of talk these days around the privacy/ownership of genetic information, particularly concerning direct consumer testing from 23andme et al., and 3rd parties who they may share your data with. Users of these services rightly have the choice to opt-out from their data being shared by the company. They can choose to share their results with whomever they want. Genetic information is 'owned' by the individual.

    But if a person discovers they have a serious heritable disease, do they have a right to keep this from their family, especially any children? Do doctors have an obligation to share with the children that they may be at risk of carrying a pathogenic mutation, even against their patients wishes? If so, how far do they need to go? What about the right not to know if you carry a mutation?

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