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The missing element: consanguinity as a component of genetic risk assessment
Michelle Bishop1, Sylvia Metcalfe, Clara Gaff
1Genetics Education and Health Research, Murdoch Childrens Research Institute, Melbourne, Australia.
Midwives rarely ask about consanguinity, despite its importance for identifying at-risk pregnancies. Lack of confidence and social taboos are key barriers to collecting this vital family history information.
Area of Science:
- Maternal Health
- Genetics
- Public Health
Background:
- Consanguinity is relevant for identifying at-risk pregnancies.
- Clinical practice data on documenting consanguinity in family history is lacking.
Purpose of the Study:
- To determine current midwifery practice in documenting consanguinity.
- To identify factors influencing the collection of consanguinity information during pregnancy assessment.
Main Methods:
- Survey of midwives in Victoria, Australia.
- Documentation of current practice, frequency of enquiry, and attitudes regarding consanguinity and family history.
Main Results:
- Only 6.4% of midwives ask about consanguinity, though 65.1% collect family history.
- Social taboos and lack of midwife confidence significantly hinder consanguinity enquiry.
- Midwives' lack of confidence was significantly associated with clinical practice (aOR: 5.3).
Conclusions:
- Organizational and social barriers impede consanguinity data collection in midwifery.
- This limits the identification of at-risk pregnancies.
- Strategies informed by change theory are needed to improve consanguineous couple identification.
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