AR&D's director Lidewij Henneman is appointed professor of Patient Perspectives on genetic testing at the department of Clinical Genetics, Amsterdam UMC, Vrije Universiteit. Her research focuses on the applications of new genetic technologies concerning pregnancy and birth, and the implications for individuals, families and wider society.
Her research concentrates on the needs, preferences and decision-making of (potential) users. In particular in relation to preconception carrier screening for recessive diseases, prenatal screening and expansion of newborn bloodspot screening.
Applications of next generation sequencing for prenatal and postnatal diagnosis of children with a congenital condition also h ave her attention. With this appointment, she will align research and policy agendas to the needs and priorities of patients.
For a recent interview (in Dutch) with the Dutch national patient organization for rare and genetic diseases (VSOP) click here: LINK