Attitudes towards carrier testing in minors: a systematic review

Area of Science:

• Medical Genetics
• Bioethics
• Pediatric Health

Background:

• Carrier testing in minors presents ethical considerations regarding autonomy and future decision-making.
• Stakeholder perspectives on genetic carrier testing for minors are diverse and often conflicting.

Purpose of the Study:

• To review and summarize attitudes of key stakeholders—minors, parents, relatives, and healthcare professionals—towards carrier testing in minors.
• To identify the range of opinions and potential conflicts surrounding genetic carrier testing for individuals under the age of majority.

Main Methods:

• A comprehensive literature search was conducted across multiple databases (PubMed, Google Scholar, etc.) from 1990 to 2004.
• Included studies were peer-reviewed, published in English, and focused on stakeholder attitudes within a family context.
• Results were synthesized and presented in a summary format.

Main Results:

• Few studies reported minors' or adults tested as children's attitudes.
• A majority of parents expressed a strong desire for their children to undergo carrier testing before reaching the age of majority.
• Relatives of affected individuals also generally favored early carrier testing.

Conclusions:

• Significant parental interest exists in determining their children's carrier status, often before legal majority.
• Healthcare professional guidelines often conflict with parental desires, advocating for deferred testing to respect future autonomy.
• Potential for intergenerational and professional conflict exists regarding carrier testing decisions for minors.