Comparison of ethical issues in sending letters to relatives via proband or by post
| Issue | Ethical consideration | |
|---|---|---|
| Letter provided via proband | Letter posted by FCS | |
| The proband’s decision to have genetic testing should not be conditional on consent to notify relatives. | The proband could choose whether to notify relatives. | |
| The proband’s decision to have genetic testing should not be conditional on involvement in notifying relatives. | The proband could choose whether to deliver letters to relatives. | Involvement of the Unit reduced the demand placed on the proband to notify relatives. |
| The right of the carrier of a mutation to maintain privacy should be upheld. | The proband could choose to post letters anonymously. | The letter sent by the Unit did not identify the proband. |
| At-risk relatives should be advised of genetic risks that may have significant personal consequences for them. | Lower response rate suggests that some probands may have failed to pass letter on, thereby denying relatives the opportunity to respond. | Higher response rate suggests that more relatives were given the opportunity to respond. |
| The privacy of at-risk relatives should be upheld. | Contact details of relatives were not provided by the proband. The Unit did not advise the proband if relatives sought genetic testing. | Contact details of relatives were only obtained from the proband. The Unit did not advise the proband of the responses of relatives. |
| At-risk relatives should be able to decide how much genetic information they wish to access. | At-risk relatives chose whether to access further information and whether to involve their doctor. | |
| The notification of genetic risk should not compromise financial decisions that at-risk relatives may make. | The general information provided in the letter did not specify the disorder in the family or the degree of risk. | |
| The interest of multiple relatives in genetic testing should not take precedence over an individual’s autonomy. | A relative could be provided with multiple letters by other family members who had sought genetic testing. | Relatives who did not seek further information were not approached by the FCS again, even if other relatives provided their contact details. |