Marcia Van Riper, PhD, RN, FAAN

Professor
Children’s Health, Disability Ethics, Family, Healthcare Communication

vanriper@email.unc.edu

919.966.4284

The University of North Carolina at Chapel Hill
School of Nursing
Carrington Hall, CB #7460
Chapel Hill, NC 27599-7460

Office: 433

Marcia Van Riper RN, PhD, FAAN has a joint appointment in the School of Nursing and the Carolina Center for Genome Sciences. She served as the Division Chair for the Family Health Division from 2007 to 2017. The primary focus of Marcia’s program of research is the family experience of being tested for and living with a genetic condition, with special emphasis on families of individuals with Down syndrome.

To date, other conditions she has focused on include Sickle Cell Disease, Cystic Fibrosis, Hereditary Breast and Ovarian Cancer, Huntington Disease, and Factor V Leiden. Marcia and her international colleagues recently completed data collection for a mixed-methods, cross-cultural study designed to address existing gaps in knowledge concerning family factors associated with adaptation and resilience in families of individuals with Down Syndrome. Over 3000 parents of individuals with Down syndrome from more than 50 countries participated in the study.

In 2018, Marcia and her team received funding from the Dhillon Jordan Shah Innovation Fund in Congenital Heart Disease to conduct their study “Families and Congenital Heart Disease: Family Adaptation in Three Groups of Families.” The purpose of the study is to explore family adaptation in three groups of families: (1) families of children with congenital heart disease, (2) families of children with Down syndrome and (3) families of children with congenital heart disease and Down syndrome.

More recently, Marcia and her team received a UNC Sleep Innovation Research Grant to support their study, “Family Management of Sleep Problems in Children with Down Syndrome.” Each year, Marcia teaches a required undergraduate course, Family Centered Genomic Health Care. Starting in the fall of 2019, a revised version of the course will be offered in Fall and Summer semester. Marcia also co-teaches a course in family research. In 2012, Marcia was awarded a Fulbright Scholar Award to spend 6 months at the Catherine McAuley School of Nursing and Midwifery, University College Cork, Ireland, collaborating with faculty on family research, teaching, and publishing.

Then in 2015, Marcia was a Fulbright Specialist at the University of Navarra in Pamplona, Spain. Marcia has taken several groups of undergraduate nursing students to Spain for a global summer nursing experience. In Spring semester 2020, Marcia will be a Visiting Professor at the University of Navarra.

2019 International Family Nursing Association Excellence in Family Nursing Award
2019 Distinguished Alumni Dodgeville High School, Dodgeville, WI
2019 Sr. Margaret Mary Endowed Lectureship, University of Incarnate Word, San Antonio, TX
2018 Faculty Mentoring Award for Junior Faculty – Women’s Leadership Council
2015 Fulbright Specialist – University of Navarra, Pamplona, Spain
2013 ISONG (International Society of Nurses in Genetics) Founders Award for Outstanding Nursing Education in Genetics
2013 (March) Visiting Professor, Glasgow Caledonian University, School of Health and Life Sciences, Glasgow, Scotland
2013 (May) Visiting Professor, Escola Superior de Enfermagem do Porto, Porto, Portugal
2012-2013 Fulbright Scholar – University College Cork, Cork, Ireland
2012 (Oct) Visiting Professor, University of São Paulo at Ribeirão Preto, College of Nursing Department, WHO Collaborating Center for Nursing Research and Development, Ribeirão Preto, São Paulo, Brazil
2012 (May) Visiting Professor, Escola Superior de Enfermagem do Porto, Porto, Portugal
2012 Honour Committee of the 11 Congreso Internacional V111 Congreso Nacional de la Asociacion de Enfermería Comunitaria (AEC) 2nd International and 8th National Congress of the Spanish and Community Nursing Association
2011 Fellow in the American Academy of Nursing
2011 Fulbright Specialist Candidate
2011 Finalist for Fulbright Scholar Program- Italy
2011 Graduation Speaker for ABSN Program, UNC-Chapel Hill School of Nursing
2011 Greatest Impact on Field of Nursing Award presented by ABSN Class of 2011, UNC-Chapel Hill School of Nursing
2011 Visiting Professor, National Defense Medical Center, Taipei, Taiwan
2010 Madeline Brill Nelson Visiting Professor, Oregon Health Sciences University, Portland, Oregon
2009 Distinguished Contribution to Family Nursing Award, presented at the 9th International Family Nursing Conference, Reykjavik, Iceland
2008 ISONG (International Society of Nurses in Genetics) Founders Award for Outstanding Genetic Research and Scholarship
2007 Elinor Reed Distinguished Visiting Professor, University of Tennessee – Health Sciences Center, Memphis, TN.
2006 Graduation Speaker for ABSN Program, UNC-Chapel Hill School of Nursing
2005 Excellence in Course Instruction Award presented by ABSN Class of 2005, UNC-Chapel Hill School of Nursing
2005 Fellow in the Parr Ethics Center
2004 Graduation Speaker for ABSN Program, UNC- Chapel Hill School of Nursing
2003 Irving Harris Visiting Professor, University of Illinois at Chicago SON
2002 Moister Ethics Fellow, UNC Institute of Arts and Humanities Ethics Program
2000 Recognized at President’s Salute to Undergraduate Achievement – nominated by an honor student who had been selected for recognition
1999 Outstanding Faculty Teaching Award received at The Ohio State University College of Nursing, 1999 Spring Convocation
1993 National Council of Family Relations Outstanding Student/New Professional Award
1991 Outstanding Young Wisconsinite
1990 Midwest Nursing Research Society, Graduate Student Poster Award, First Place Doctoral Student Category
1987 Association for Retarded Citizens, Circle of Friends Award
1986 Phi Kappa Phi
1975 Sigma Theta Tau International Honor Society of Nursing, Delta Gamma Chapter
1974 Mortar Board
1972 Alpha Lambda Delta

Book Chapters

Van Riper, M., & Fleming, L. (2017). Genomics and family nursing across the lifespan.  In. J. R. Kaakinen & D. P. Coehlo (Eds.) Family health care nursing: theory, practice, research. (6th ed) (pp. 211-230). Philadelphia: F.A. Davis Company.

Van Riper, M. (2016). Downs syndrom I familien. In Ostergaard, B., & Konradsen, H.  Familiesygepleje. (pp. 203-213). Munksgaard: Kobenhavn.

Van Riper, M. (2016). Clinical genetics.  In D.L. Lowdermilk, S. E., Perry, M.C. Cashion, & K.R. Alden (Eds.), Maternity and women’s health care (11th ed.) (pp. 41-58). St Louis, MO: Mosby.

Van Riper, M. (2012). Clinical genetics. In D. Lowdermilk & S. Perry (Eds.), Maternity and women’s health care (10th ed.) (pp. 43-59). St Louis, MO: Mosby.

Van Riper, M. (2011). Family nursing and genomics in the 21st Century. In E. K. Svavarsdóttir & H. Jonsdottir (Eds.), Family nursing in action (69-83). Reykjavík: University Press of the University of Iceland.

Van Riper, M. (2010). Genomics and the family: Integrative frameworks. In K. P. Tercyak (Ed.), Handbook of genomics and the family (pp. 109-139). New York: Springer.

Landsman, G. & Van Riper, M. (2007). Incorporating children with disabilities into family life. In E. J. Sobo, K. Dennis, & P. S. Kurtin (Eds.), Optimizing care for children with special health care needs in their early years (pp. 83-115). Baltimore, MD: Paul H. Brookes Publishing, Inc.

Van Riper, M. (2007). Genetics. In D. Lowdermilk & S. Perry (Eds.), Maternity and women’s health care (9th ed.). St Louis, MO: Mosby.

Van Riper, M. (2006). Ethical, legal, and social implications. In M. S. Runge & W. C. Patterson (Eds.), Principles of molecular medicine (pp. 61-65). Totowa, NJ: Humana Press Inc.

Van Riper, M., & Gallo, A. (2005). Family, health, and genomics. In D. R. Crane, & E. S. Marshall (Eds.), Handbook of families and health: Interdisciplinary perspective (pp. 195-217). Thousand Oaks, CA: Sage Publications Inc.

Van Riper, M. (2004). Genetics. In L. Davis (Ed.), Cardiovascular nursing secrets. (pp. 503-510). Philadelphia, PA: Elsevier Science.

Van Riper, M. (2003). Genetics. In D. Lowdermilk & S. Perry (Eds.), Maternity and women’s health care (8th ed.). (pp. 52-71). St Louis, MO: Mosby.

Van Riper, M (2001). Factors influencing family functioning and the health of family members. In S. Hanson (Ed.), Family health care nursing: Theory, practice, and research (2nd ed). (pp. 122-145). Philadelphia: FA Davis.

McCubbin, M., & Van Riper, M. (1996). Factors influencing family functioning and the health of family members.  In S. Hanson & S. Boyd (Eds.), Family health care nursing: Theory, practice, and research (pp.101-124).  Philadelphia: FA Davis.

Van Riper, M., & Selder, F. (1989). Parental responses to the birth of a child with Down syndrome.  In J. Rainer, S. Rubin, M. Bartalos, J. Maidman, A. Kutscher, K. Anyane-Yeboa, P. Taterka, & J. Malin (Eds.), Genetic disease: The unwanted inheritance (pp. 59-76).  New York: Haworth Press.

Refereed Publications

Choi, E.K., Van Riper, M., Jang, M., & Han, S.W. (2019) Sleep problems in Korean children with Down syndrome and parental quality of life. Journal of Intellectual Disability Research. Early View https://doi.org/10.1111/jir.12675 (data-based, collaboration with international colleagues)

Jo, M., Song, M.K., Knafl, G.J. Beeber, L., Yoo, Y.S. & Van Riper, M. (2019). Family-clinician communication in the ICU and its relationship to psychological distress of family members: a cross-sectional study. International Journal of Nursing Studies, 95, 34-39. 10.1016/j.ijnurstu.2019.03.020. Epub 2019 Apr 5. PMID: 31005678. (data-based, publication from student’s dissertation)

Choi, H., & Van Riper, M. (2019). mHealth family adaptation intervention for families of young children with Down syndrome: A feasibility study. Journal of Pediatric Nursing, Mar 27. pii: S0882-5963(18)30577-3. doi: 10.1016/j.pedn.2019.03.010. [Epub ahead of print] PMID: 30928311. (data-based, collaboration with international colleagues).

Chusri, O., Deoisres, W., & Van Riper, M. (2019). Influencing of family management in families with thalassemic children on health-related quality of life and family functioning: SEM approach. Walailak J Sci & Tech, 16, (1), 27-38. (data-based, publication with an international student).

Van Riper, M., Knafl, G., Rosigno, C., & Knafl, K. (2018). Family management of childhood chronic conditions: does it make a difference if the child has an intellectual disability. American Journal of Medical Genetics: Part A. American Journal of Medical Genetics: Part A., 176, (1), 82-91. doi: 10.1002/ajmg.a.38508. Epub 2017 Nov 15. PMID 29140588. (data-based, first author)

Choi, E.K., Van Riper, M., Jang, M. & Han, S.W. (2018). Adaptation and resilience in families of children with spina bifida in South Korea. Rehabilitation Nursing, 43, (6), 343-350. doi: 10.1097/rnj.0000000000000200. PMID: 30395097 (data-based, collaboration with international colleagues)

Barros da Silva, R., Barbieri-Figueiredo, M.D.C., & Van Riper, M. (2018). Breastfeeding experiences of mothers of children with Down syndrome. Comprehensive Child and Adolescent Nursing, 10, 1-15. doi: 10.1080/24694193.2018.1496493. [Epub ahead of print] (data-based, publication with international student)

Caples, M., Martin, A.M., Dalton, C, Marsh, L., Savage, E., Knafl, G., & Van Riper, M. (2018) Adaptation and resilience in families of individuals with Down syndrome living in Ireland. British Journal of Learning Disabilities, 1-9. https://doi.org/10.1111/bld.12231 (data-based, collaboration with international colleagues, senior author)

Estrem, H., Thoyre, S., Knafl, K., Pados, B., & Van Riper, M. (2018). “It’s a long term process”: Description of daily family life when a child has feeding disorder. Journal of Pediatric Health Care, 32, (4), 340-347. (data-based, publication from student’s dissertation)

Knafl, K., & Van Riper, M. (2017). Tips for developing a successful family research proposal. Journal of Family Nursing, 23, (4):450-460. doi: 10.1177/1074840717743248. PMID 29199534

Jo. M., Yoo, Y.S., Knafl, G., Van Riper, M., Beeber, L., & Song, M.K. (2017). Family-clinician communication about end-of-life care in Korea: A narrative review. Journal of Hospice & Palliative Nursing, 19, (6), 597-601. (publication from student’s dissertation)

Fleming, L., Knafl, K. & Van Riper, M. (2017). How the child’s gender matters for families having a child with congenital adrenal hyperplasia. Journal of Family Nursing, 23, (4) 516-533. doi: 10.1177/1074840717735499. Epub 2017 Oct 19. PMID 29046104. (data-based, publication from student’s dissertation)

Jo, M., Song, M.K., Van Riper, M., Yoo, Y.S., & Van Riper, M. (2017). Translation and cultural adaptation of the quality of communication questionnaire for ICU family members in Korea. Heart & Lung, 46, (6), 458-463. doi: 10.1016/j.hrtlng.2017.08.002. EPub 2017 Sept 12 PMID 28912058 (data-based, publication from student’s dissertation)

Fleming, L., Knafl, K., Knafl, G. & Van Riper, M. (2017). Parental management of adrenal crisis in families having a child with congenital adrenal hyperplasia. Journal for Specialists in Pediatric Nursing, 22, (4) doi: 10.1111/jspn.12190. Epub 2017 Aug 3, PMID 28771930 (data-based, publication from student’s dissertation)

Ford, S., Choi, H., Brunssen, S., & Van Riper, M. (2017). Delays and disabilities in children: NP knowledge and care management. Journal of Nurse Practitioners, 13, (2), e67-73. doi: 10.1016/j.nurpra.2016.11.005. PMID 28626360 (data-based, publication from student’s master’s project)

Fleming, L., Van Riper, M., & Knafl, K. (2017). Management of childhood congenital adrenal hyperplasia: an integrative review of the literature. Journal of Pediatric Health Care, 31, (5), 560-577. doi: 10.1016/j.pedhc.2017.02.004. PMID 28416079 (publication from student’s dissertation)

Choi, H., & Van Riper, M. (2017). Adaptation in families of children with Down syndrome in East Asian Countries: an integrative review. Journal of Advanced Nursing, 73, (8), 1792-1806. doi: 10.1111/jan.13235. PMID 27987318 (collaboration with international colleague)

Lopes-Júnior L.C., Carvalho Júnior, P.M., de Faria Ferraz , VE, Nascimento, L.C., Van Riper, M., Flória-Santos, M. (2017). Genetic education, knowledge and experiences among primary care nurses and physicians in a Brazilian city: a cross-sectional study. Nursing and Health Sciences, 19, 66-74. doi: 10.1111/nhs.12304. PMID 27510609 (data-based, collaboration with international colleagues)

Choi, H., & Van Riper, M. (2016). Maternal perceptions to open-ended questions about life with Down syndrome in Korea. The Qualitative Report, 21, (2), 288-298. PMID 24612055 (data-based, collaboration with international colleague)

Choi, H., & Van Riper, M. (2014) Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome, Journal of Intellectual Disability Research, 58 (10), 962-977 doi: 10.1111/jir.12126. PMID 24612055. (data-based, publication from student’s dissertation)

Thoyre, S. M., Pados, B.F., Park, J., Estrem, H., Hodges, E.A., McComish, C., Van Riper, M., & Murdoch, K. (2014).  Development and content validation of the Pediatric Eating Assessment Tool (Pedi-Eat). American Journal of Speech-Language Pathology, 23, 46-59. doi: 10.1044/1058-0360(2013/12-0069). PMID 24097795. (data-based)

Takataya, K., Van Riper, M., Yeo, S., Kondo, Y., Nakamoto, K., Okumura, K., Sakagami, R., & Mikami, Y. (2014). Adaptation in families living with Down syndrome. Yamanashi Nursing Journal, 13 (1), 1-8. (data-based, international collaboration)

Choi, H., & Van Riper, M. (2013) Siblings of children with Down syndrome: An integrative review. MCN, The American Journal of Maternal/Child Nursing, 38, 72-78. doi: 10.1097/NMC.0b013e31826bad8e. PMID 23426048. (publication from a student’s dissertation)

Choi, H., Van Riper, M., & Thoyre, S. (2012) Decision making following a prenatal diagnosis of Down syndrome: an integrative review. Journal of Midwifery and Women’s Health, 57 (2), 156-164. doi: 10.1111/j.1542-2011.2011.00109.x. PMID 22432488. (publication from a student’s dissertation)

Van Riper, M., & Choi, H. (2011) Family-provider interactions surrounding the diagnosis of Down syndrome. Genetics in Medicine, 13 (8), 714-716. doi: 10.1097/GIM.0b013e3182209f21. PMID 21673579. (data-based, publication from a student’s dissertation)

Dodson, C., & Van Riper, M. (2011). Analysis of clinicians’ attitudes towards pharmacogenomics. Personalized Medicine, 8(5), 533-540 (data-based, publication from a student’s dissertation)Van Riper, M. (2011). The International Family Nursing Association: Fostering the individual and collective development of family nurses. Revista Iberoamericana de Enfermería Comunitaria, 4, 52-55.

Hsiao, C., Van Riper, M., Lee, S.H., Chen, S.J., & Lin, S.C. (2011). Taiwanese nursing students’ perceived knowledge and clinical comfort with genetics. Journal of Nursing Scholarship,43 (2), 125-132. doi: 10.1111/j.1547-5069.2011.01389.x. PMID 21605316. (data-based, collaboration with international colleagues)

Hsiao, C., & Van Riper, M. (2011). Individual and family adaptation in Taiwanese families living with Down syndrome. Journal of Family Nursing, 17, 182-201. doi: 10.1177/1074840711405205. PMID 21531856. (data-based, collaboration with international colleague)Van Riper, M. (2011). Down syndrome and the family. In M. Croft (Ed.), Encyclopedia of family health (pp. 335-337). Los Angeles, CA: Sage.

Van Riper, M. (2011). Genetic conditions, experiences of families during the prediagnosis and diagnosis phase. In M. Croft (Ed.), Encyclopedia of family health (pp. 526-529). Los Angeles, CA: Sage.

Hsiao, C., & Van Riper, M. (2010). Research on caregiving in Chinese families living with mental illness: A critical review. Journal of Family Nursing. 16 (1), 68-100. doi: 10.1177/1074840709358405. PMID 20145286. (publication from a student’s dissertation)

Cuskelly, M., Hauser-Cram, P., & Van Riper, M. (2009). Families of children with Down syndrome: What we know and what we need to know. Down Syndrome Research and Practice, 12.105-113.  http://www.down-syndrome.org/reviews/2079/?page=1 (collaboration with international colleagues)

Hsiao, C., & Van Riper, M. (2009). Individual and family adaptation in Taiwanese families of individuals with severe and persistent mental illness (SPMI). Research in Nursing and Health, 32 (3), 307-320. doi: 10.1002/nur.20322. PMID 19283859. (data-based, publication from a student’s dissertation)

Spector, D., Mishel, M., Skinner, C., DeRoo, L., Van Riper, M., & Sandler, D.P. (2009). Breast cancer risk perception and lifestyle behaviors among White and Black women with a family history of the disease. Cancer Nursing: An International Journal for Cancer Care. 32, 299-308. (data-based, publication from a student’s dissertation)

Van Riper, M. (2007). Families of children with Down syndrome: Responding to a “change of plans” with resilience. Journal of Pediatric Nursing, 22, 116-128. PMID 17382849. (data-based)

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. Journal of Midwifery and Womens Health. 50 (3), 243-245. PMID 15895004. (data-based)

Van Riper, M. (2005). Genetic testing and the family. Journal of Midwifery and Womens Health, 50 (3), 227-233. PMID 15895001. (data-based)

Van Riper, M., & Mc Kinnon, W. (2004). Genetic testing for breast and ovarian cancer susceptibility: A family experience. Journal of Midwifery and Womens Health, 49 (3), 210-219. PMID 15134674. (data-based)

Foley, B., Redman, R., Horn, E., Davis, G., Neal, E., Van Riper, M. (2003). Determining nursing faculty development needs. Nursing Outlook, 51 (5), 227-232. PMID 14569229.

Davis, G., Foley, B.J., Horn, E., Neal, E., Redman, R., & Van Riper, M. (2003). Creating a comprehensive faculty development program. Journal of Faculty Development, 19, 19-28.

Van Riper, M. (2003). A change of plans: The birth of a child with Down syndrome. American Journal of Nursing, 103, 71-74. PMID 12802161. (data-based)

Van Riper, M. (2003). The sibling experience of living with childhood chronic illness and disability. Annual Review of Nursing Research, 21, 279-302. PMID 12858700.

Van Riper, M. & Cohen, W. (2001). Caring for children with Down syndrome and their families. Journal Pediatric Health Care, 15, 123-131. PMID 11353361.

Van Riper, M. (2001). Maternal perceptions of family-provider relationships and well-being in families of preterm infants. Heart and Lung, 30 (1), 74-84. PMID 11174370. (data-based)

Van Riper, M. (2000). Family variables associated with sibling well-being in families of children with Down syndrome. Journal of Family Nursing, 6, 267-286. (data-based)

Van Riper, M. (1999). Maternal perceptions of family-provider relationships and sibling well-being in families of children with Down syndrome. Research in Nursing & Health, 22, 357-368. PMID 10520188. (data-based)

Van Riper, M. (1999). Living with Down syndrome: The family experience. Down Syndrome Quarterly, 4, 1-11. (data-based)

Pridham, K., Limbo, R., Schroeder, M., Thoyre, S., & Van Riper, M. (1998). Guided participation and development of care-giving competencies for families of low birth-weight infants. Journal of Advanced Nursing, 28, 948-958. (data-based)

Van Riper, M. (1997). Death of a sibling: Five sisters, five stories. Pediatric Nursing, 23, 587-593. PMID 9429516.

Van Riper, M., Pridham, K., & Ryff, C. (1992). Symbolic interactionism: A perspective for understanding parent-nurse interactions following the birth of a child with Down syndrome.  Maternal Child Nursing Journal, 20, 21-39. Erratum in: Maternal Child Nursing Journal 1992 Fall-Winter; 20 (3-4):229. PMID 1281901. (data-based)

Van Riper, M., Ryff, C., & Pridham, K. (1992). Parental and family well-being in families of children with Down syndrome: A comparative study.  Research in Nursing & Health, 15, 227-235. PMID 1387235. (data-based)

Van Riper, M. & Selder, F. (1989).  Parental responses to the birth of a child with Down syndrome.  Loss, Grief and Care: A Journal of Professional Practice, 3, 59-75. (data-based).

Published abstracts

Van Riper, M., Knafl, G., & Knafl, G. (2018, June). Family management of life with Down syndrome: A cross-cultural exploration. Poster presentation at the 4th PNAE Congress on Paediatric Nursing, Athens, Greece.

Van Riper, M., Knafl, G., Duarte E.D., & Choi, H. (2016). Families of children with Down syndrome: a cross-cultural study. Paper presented at 3rd PNAE Congress on Paediatric Nursing, Porto, Portugal, Nursing children and young people 28, (4), 82-83.

Van Riper, M. (2016). Reproductive decision-making in families of children with Down syndrome. Paper presented at 3rd PNAE Congress on Paediatric Nursing, Porto, Portugal, Nursing children and young people, 28, (4), 83-84.

Van Riper, M. (2007). Change of plans: Living with genetic conditions in the family. Paper presented at the 20th Annual International Society of Genetics Conference, Bristol, England, Nursing and Health Sciences, 9, 251.

Van Riper, M. (2003). Breast cancer and family genetics – tackling the ethics. Paper presented at the AICR/WCRF International Research Conference on Food, Nutrition and Cancer, Journal of Nutrition, 133(11): 3845S-3846S Suppl. 1.

Van Riper, M. (1998). The sibling experience in families that include a child with Down syndrome. Down Syndrome Quarterly, 3, 18.

Birch, A., Warren, N., Patterson, B., & Van Riper, M. (1998). Siblings of children with Down syndrome: The relationship between knowledge about Down syndrome and self-concept. Journal of Genetic Counseling, 7, 488-489.

Products of interdisciplinary scholarship

Prince, E.R., Cadigan, J., Henderson, G.E., Evans, J.P., Adams, M., Coker-Schwimmer, M., Penn, D. Van Riper, M., Corbie-Smith, G., & Jonas, D. (2017). Is there evidence that we should screen the general population for Lynch Syndrome with genetic testing? A systematic review. Pharmacogenomics and Personalized Medicine, 10, 49-60. doi: 10.2147/PGPM.S123808. PMID 28260941 (interdisciplinary collaboration)

Adams, M., Evans, J.P., Henderson, G., Berg, J.S., & GeneScreen Investigators (2016). The promise and peril of genomic screening in the general population. Genetics & Medicine, 18, (6), 593-599. doi: 10.1038/gim.2015.136. (interdisciplinary collaboration)

Lázaro-Muñoz, G., Conley, J.M., Davis, A.M., Van Riper, M., Walker, R.L., & Juengst, E.T. (2015). Response to open peer commentaries of “Looking for trouble: preventive genomic sequencing in the general population and the role of patient choice”, American Journal of Bioethics, 15, (20), W6-W9. doi: 10.1080/15265161.2015.1096069.  PMID: 26632375 (interdisciplinary collaboration)

Lázaro-Muñoz, G., Conley, J.M., Davis, A.M., Van Riper, M., Walker, R.L., & Juengst, E.T. (2015). Looking for trouble: Looking for trouble: preventive genomic sequencing in the general population and the role of patient choice. American Journal of Bioethics, 15 (7), 3-14. doi: 10.1080/15265161.2015.1039721. PMID 26147254 (interdisciplinary collaboration)

Prows, C., Hopkin, R., Barnoy, S., & Van Riper, M. (2013). An update of childhood genetic disorders. Journal of Nursing Scholarship, 45(1), 34-42. doi: 10.1111/jnu.12003. PMID 23294802 (interdisciplinary collaboration)

Roederer, M., Van Riper, M., Valgus, J., Knafl, K., & McLeod, H. (2012). Knowledge, attitudes, and education of pharmacists in North Carolina regarding pharmacogenetic testing. Personalized Medicine, 9, 19-27. (data-based, interdisciplinary collaboration – I was the PI of the study)

Products of engaged scholarship

Knafl, K., & Van Riper, M. (2017, May). State of the science family interviewing: through the eyes of the individuals. International Family Nursing Association Webinar. https://internationalfamilynursing.org/2017/04/28/webinar-state-of-the-science-of-family-interviewing-through-the-eyes-of-the-individual/

Van Riper, M. (2015, September). Educating nurses in genomics: overcoming barriers and integrating creative strategies. AACN genomic webinar series. https://www.aacn.nche.edu/webinars/info-page?sessionaltcd=WFR15_09_17

Van Riper, M. (2015). Genetics, birth and biological revolution, Case study for Sigma Theta Tau International Health Care Ethics Certificate Program Online Course. http://www.nursingsociety.org/docs/default-source/Publications/hcep_program-overview.pdf?sfvrsn=2

Van Riper, M. (2012, November). Using a family perspective to integrate genomics into the nursing curricula. Webinar – International Family Nursing Association http://internationalfamilynursing.org/2012/11/09/family-perspective-integrate-genomics/

Rakhra-Burris, T.K., Auman, J.T., Deverka, P., Dressler, L.G., Evans, J.P., Goldberg, R.M., Havener, T., Hoskins, J.M., Jonas, D.E., Long, K.M., Motsinger-Reif, A.A., Irvin, W.J., Richards, K.L., Roederer, M.W., Valgus, J.M., Van Riper, M., Vernon, J.A., Zamboni, W. C., Wagner, M.J., Walko, C.R., Weck, K.E., Wiltshire, T., & McLeod, H.L. (2010). UNC Institute for Pharmacogenomics and Individualized Therapy: interdisciplinary research for individual care. Pharmacogenomics, 11 (1), 13-21.

Van Riper, M. (2004). What families need to thrive. Down Syndrome News, 27, 18-22. http://www.ndsccenter.org/resources/general-information/ds-news-articles/what-families-need-to-thrive/

Principal Investigator, Social Determinants of Health-Related Quality of Life and Family Adaptation in Families of Children with Congenital Heart Disease, Families of Children with Down Syndrome and Families of Children with Both Congenital Heart Disease and Down Syndrome, Dhillon Jordan Shar Innovation Fund in Congenital Heart Disease, 2019-2020

Principal Investigator, Family Management of Sleep Problems in Children with Down Syndrome, UNC Sleep Innovation Research Grant, 2019-2020

Principal Investigator, Families and congenital heart disease: family adaptation in three groups of families,  Dhillon Jordan Shar Innovation Fund in Congenital Heart Disease, 2018-2020

Investigator, Center for Genomics and Society G. Henderson PI, NIH, NHGRI, ELSI Program, P50HG004488, 2013-2018.

Investigator, North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing (NCGENES). J. P. Evans PI. NIH, NHGRI, 2012-2016.

Principal Investigator. Researching ELSI Research Training. NIH, NHGRI, ELSI Program, R03HG003982, 05/01/2006-05/31/11.

Co-Investigator, Closing the gap: Bringing genetics to clinical medicine. J. Evans, PI, Investments for the Future Award, University of North Carolina at Chapel Hill. 5/2007–5/2010.

Co-Principal Investigator. Family factors influencing adaptation in Taiwanese families raising children with Down syndrome. Chiu-Yueh Hsiao PI, Faculty Research Grant funded by Chung Shan Medical School, Taiwan. 2009-2010.

Co-Principal Investigator. ELSI scale-up: Large sample gene discovery and disclosure. D. Bailey PI., NIH, NHGRI, ELSI Program, P20HG003387, Planning Grant for a Center for Excellence in ELSI Research, 7/01/2004-6/30/06.

Principal Investigator. African-American families making sense of and using genetic testing results. Faculty Research Opportunity Grant, University of North Carolina at Chapel Hill School of Nursing, Chapel Hill, North Carolina, 4/15/2004-08/31/05.

Principal Investigator. Minority families being screened for and living with genetic conditions. NIH, NINR, Center for Innovations in Health Disparities Research Pilot Study, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, 10/01/03-09/30/2005.

Principal Investigator. A multidisciplinary course in genetics focusing on ethical, legal, and social implications of advances in genetics. UNC-CH Health Affairs Interdisciplinary Grant. January 2003

Co-Principal Investigator. Feeding issues for children with Down syndrome and their families. NIH, NINR, Center for Research on Chronic Illness Pilot Study with Co-PI S. Thoyre, P30NR04962, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, 5/01/02- 9/01/04.

Principal Investigator. Family experience of genetic testing: ethical dimensions. NIH, NINR, K01NR00139, 08/01/2000-08/31/2004.

  • Family Adaptation in Families of Children with Congenital Heart Disease
  • Family experience of being tested for and living with a genetic condition
  • Resilience and adaptation in families of individuals with Down syndrome
  • Ethical, legal, and social implications of advances in genomics