Marcia Van Riper
Associate Professor & Chair
Social & Genetic Implications of Genetic Testing
The main focus of Dr. Van Riper’s research has been the family experience of being tested for or living with a genetic condition. In particular, she has conducted numerous studies concerning families of children with Down syndrome. Some of these studies focused on a specific event such as the diagnosis itself, others focused on the ongoing family-provider relationships, or how individuals and the family as a unit respond to the challenges associated with raising a child with Down syndrome. It is clear that the genetic-testing experience can dramatically influence the lives of family members, as well as the decisions they make since testing usually occurs during pregnancy. Dr. Van Riper also found that many healthcare providers have little or no understanding of how families define and manage the ethical issues that emerge during genetic testing. More recently, she has studied how families deal with the ethical issues that emerge during four different types of genetic testing: triple-marker screening for Down syndrome, carrier testing for cystic fibrosis, BRCA1 & 2 testing for families at high risk for breast cancer, and mutation analysis for Huntington’s disease. Understanding how families make sense of and use these test results can improve the effectiveness of healthcare providers and ultimately improve the lives of both the patients and their families.
Van Riper M. (2007) Families of children with down syndrome: responding to "a change in plans" with resilience. J Pediatr Nurs. 22(2):116-28.
Van Riper M. (2006) Family nursing in the era of genomic health care: we should be doing so much more! J Fam Nurs. 12(2):111-8.
Van Riper, M. (2005) Ethical, legal, and social implications. In Principles of Molecular Medicine. M.S. Runge & W.C. Patterson (Eds.), Totowa, NJ: Humana Press Inc.
Van Riper, M., & Gallo, A. (2005) Family, health, and genomics. In Handbook of Families and Health: Interdisciplinary Perspectives. Chapter 12 (pp. 195-217). D.R. Crane, & E.S. Marshall (Eds.) Thousand Oaks: Sage Publications Inc.
Ball, J., Van Riper, M., Engstrom, E., & Matheson, J. (2005) Incidental finding of ultrasound markers of Down syndrome in the second trimester of pregnancy: a case study. J Midwifery Womens Health, 50(3):243-5.
Van Riper M. (2005) Genetic testing and the family. J Midwifery Womens Health 50:227-33.