“Are You Sure You Want To Know?"

Investigating patient perspectives and decisions in the world of new genetic technologies

SECTION: COMMUNITY GENETICS

Dr. Lidewij Henneman was appointed Professor of Patient Perspectives on Genetic Testing at the Department of Human Genetics, Amsterdam UMC. On October 14th, 2021, her inaugural lecture titled “Zeker weten?!”  took place in the Aula of the Vrije Universiteit in Amsterdam.

Professor Henneman’s research focuses on how the applications of new genetic technologies before, during, and after pregnancy impact individuals, families, and the wider society.

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New genetic technologies are being developed at a rapid pace. While this opens the door to new opportunities, it also raises ethical concerns. How much information is too much? What do prospective or expecting parents want when it comes to preconception and prenatal screening? Professor Henneman and her team explores these questions and more to help align responsible implementation of new genetic reproductive applications with the needs of the community.
“We and our researchers want to explore people’s reasons for deciding whether or not to take part in screening, and the extent to which pregnant women are making an informed choice.” – Prof. Henneman

Employing both qualitative and quantitative research methodologies, Prof. Henneman and her researchers investigate:

 

  • Preconception carrier screening for recessive disorders
  • Prenatal screening using the non-invasive prenatal test (NIPT) (TRIDENT studies)
  • The expansion of newborn bloodspot screening (PANDA study)
  • The use of next generation DNA sequencing for prenatal and postnatal diagnosis of children with a congenital condition
To set carefully considered policy agendas and fill the gaps in patient care and support, the research is done in close collaboration with the patient organization Dutch Genetic Alliance (VSOP), relevant healthcare professionals, key (inter)national organizations, and other stakeholders in the field.

In commemoration of Prof. Henneman’s appointment, a symposium “Screening rond zwangerschap en geboorte” was held, chaired by Prof. Hans Meij. Esteemed speakers addressed various aspects of preconception, prenatal and perinatal genetic testing, including Elsbeth van Vliet-Lachotzki (VSOP), Prof. Mireille Bekker, Prof. Clara van Karnebeek and Prof. Jacqueline Broerse.

Prof. Henneman’s inaugural lecture can be read here, or consult her full research profile.

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