Skip to main content
SpringerLink
Log in

Willingness of women to participate in obstetrical and pediatric research involving biobanks

  • Original Article
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

Abstract

Use of biobanks for future genetic/genomic testing has increased. Biospecimens are increasingly being collected from infants/children; however, little is known about attitudes towards collection of biospecimens from postpartum women and their child. Using a hypothetical consent, this study investigated willingness to participate and attitudes, beliefs, and concerns related to consent materials requesting the biobanking genetic samples. A cross-sectional mixed methods design included women who reviewed a hypothetical consent related to biobanking genetic samples. Women were asked about their willingness to participate, followed by a focus group about biobanks and genetic/genomic testing. Post-focus group questionnaires assessed willingness to participate, the influence of study characteristics, and attitudes about genetic testing. Women (N = 37) were 29.0± 7.3 years of age (range 19–44); 51% had children and 28% were currently pregnant. A total of 46% were Hispanic (H), 38% were White non-Hispanic (WNH), and 16% were Native American (NA). Seventy-six percent (28/37) initially indicated that they would participate in the hypothetical study. Race and ethnicity impacted whether women would participate. Fewer NA women indicated that they would participate compared with H women and with WNH women (p < 0.02). Age, pregnancy status, having children, education level, insurance status, and income had no impact on participation decision and willingness to biobank specimens. NA and H women indicated that they were less likely than WNH women to agree to participate in a long-term biobank study. Given the importance of determining the genetic influence of health and disease, it is critical to attend to the questions and concerns of minority women regarding genetic studies.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  • Abdul-Rahman OA, Rodriguez B, Wadlinger SR, Slutsman J, Boyle EB, Merrill LS, Botkin J, Moye J Jr (2016) Success rates for consent and collection of prenatal biological specimens in an epidemiologic survey of child health. Birth Defects Res A Clin Mol Teratol 106(1):47–54

    Article  PubMed  CAS  Google Scholar 

  • Annett RD, Brody JL, Scherer DG, Perkett EA (2004) Perception of risk associated with asthma research procedures among adolescents, parents, and pediatricians. J Allergy Clin Immunol 114(5):1138–1145

    Article  PubMed  Google Scholar 

  • Beskow LM, Friedman JY, Hardy NC, Lin L, Weinfurt KP (2010) Simplifying informed consent for biorepositories: stakeholder perspectives. Genet Med 12(9):567–572

    Article  PubMed  PubMed Central  Google Scholar 

  • Boyer GJ, Whipple W, Cadigan RJ, Henderson GE (2012) Biobanks in the United States: how to identify an undefined and rapidly evolving population. Biopreserv Biobank 10(6):511–517

    Article  PubMed  PubMed Central  Google Scholar 

  • Brisson AR, Matsui D, Rieder MJ, Fraser DD (2012) Translational research in pediatrics: tissue sampling and biobanking. Pediatrics. 129(1):153–162

    Article  PubMed  Google Scholar 

  • Brody JL, Scherer DG, Annett RD, Pearson-Bish M (2003) Voluntary assent in biomedical research with adolescents: a comparison of parent and adolescent views. Ethics Behav 13(1):79–95

    Article  PubMed  Google Scholar 

  • Brody JL, Annett RD, Scherer DG, Perryman ML, Cofrin KM (2005) Comparisons of adolescent and parent willingness to participate in minimal and above-minimal risk pediatric asthma research protocols. J Adolesc Health 37(3):229–235

    Article  PubMed  PubMed Central  Google Scholar 

  • Brody JL, Scherer DG, Annett RD, Turner C, Dalen J (2006) Family and physician influence on asthma research participation decisions for adolescents: the effects of adolescent gender and research risk. Pediatrics. 118(2):e356–e362

    Article  PubMed  PubMed Central  Google Scholar 

  • Brothers KB (2011) Biobanking in pediatrics: the human nonsubjects approach. Perinat Med 8(1):79

    Google Scholar 

  • Campbell E, Ross LF (2005) Parental attitudes and beliefs regarding the genetic testing of children. Community Genet 8(2):94–102

    Article  PubMed  Google Scholar 

  • Coffey MJ, Ross L (2004) Human subject protections in genetic research. Genet Test 8(2):209–213

    Article  PubMed  Google Scholar 

  • Collins FS (2015) Exceptional opportunities in medical science: a view from the National Institutes of Health. JAMA. 313(2):131–132

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  • Collins FS, Varmus H (2015) A new initiative on precision medicine. N Engl J Med 372(9):793–795

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  • Critchley CR, Nicol D, Otlowski MF, Stranger MJ (2012) Predicting intention to biobank: a national survey. Eur J Pub Health 22(1):139–144

    Article  Google Scholar 

  • Dang JH, Rodriguez EM, Luque JS, Erwin DO, Meade CD, Chen MS Jr (2014) Engaging diverse populations about biospecimen donation for cancer research. J Community Genet 5(4):313–327

    Article  PubMed  PubMed Central  Google Scholar 

  • Hall MA, Camacho F, Lawlor JS, Depuy V, Sugarman J, Weinfurt K (2006) Measuring trust in medical researchers. Med Care 44(11):1048–1053

    Article  PubMed  Google Scholar 

  • Haring RC, Henry WA, Hudson M, Rodriguez EM, Taualii M (2018) Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse). J Cancer Educ 33(1):44–51

    Article  PubMed  Google Scholar 

  • Henderson GE, Cadigan RJ, Edwards TP et al (2013) Characterizing biobank organizations in the US: results from a national survey. Genome Med 5(1):3

    Article  PubMed  PubMed Central  Google Scholar 

  • Hens K, Nys H, Cassiman JJ, Dierickx K (2011a) The storage and use of biological tissue samples from minors for research: a focus group study. Public Health Genomics 14(2):68–76

    Article  PubMed  CAS  Google Scholar 

  • Hens K, Cassiman JJ, Nys H, Dierickx K (2011b) Children, biobanks and the scope of parental consent. Eur J Hum Genet 19(7):735–739

    Article  PubMed  PubMed Central  Google Scholar 

  • Joseph JW, Neidich AB, Ober C, Ross LF (2008) Empirical data about women’s attitudes toward a biobank focused on pregnancy outcomes. Am J Med Genet A 146A(3):305–311

    Article  PubMed  Google Scholar 

  • Kang B, Park J, Cho S, Lee M, Kim N, Min H, Lee S, Park O, Han B (2013) Current status, challenges, policies, and bioethics of biobanks. Genomics Inform 11(4):211–217

    Article  PubMed  PubMed Central  Google Scholar 

  • Klima J, Fitzgerald-Butt SM, Kelleher KJ, Chisolm DJ, Comstock RD, Ferketich AK, McBride K (2014) Understanding of informed consent by parents of children enrolled in a genetic biobank. Genet Med 16(2):141–148

    Article  PubMed  Google Scholar 

  • Kong CC, Tarling TE, Strahlendorf C, Dittrick M, Vercauteren SM (2016) Opinions of adolescents and parents about pediatric biobanking. J Adolesc Health 58(4):474–480

    Article  PubMed  Google Scholar 

  • Kozinetz CA, Royse K, Graham SC, Yu X, Moye J, Selwyn BJ, Forman MR, Caviness C (2016) Consenting postpartum women for use of routinely collected biospecimens and/or future biospecimen collection. J Community Genet 7(2):153–158

    Article  PubMed  PubMed Central  Google Scholar 

  • Lemke AA, Halverson C, Ross LF (2012) Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago. Am J Med Genet A 158A(5):1029–1037

    Article  PubMed  PubMed Central  Google Scholar 

  • Li Y, Steinberg AG, Bain L, Yaeger D, Bieler A, Ewing R, Kaimal G, Krantz I (2007) Assessing parental attitudes toward genetic testing for childhood hearing loss: before and after genetic consultation. Am J Med Genet A 143A(14):1546–1553

    Article  PubMed  Google Scholar 

  • Li Y, Luo Z, Holzman C, Liu H, Margerison CE (2018) Paternal race/ethnicity and risk of adverse birth outcomes in the United States, 1989-2013. AIMS Public Health 5(3):312–323

    Article  PubMed  PubMed Central  Google Scholar 

  • Nechuta S, Mudd LM, Elliott MR, Lepkowski JM, Paneth N, Michigan Alliance for the National Children’s S (2012) Attitudes of pregnant women towards collection of biological specimens during pregnancy and at birth. Paediatr Perinat Epidemiol 26(3):272–275

    Article  PubMed  Google Scholar 

  • Neidich AB, Joseph JW, Ober C, Ross LF (2008) Empirical data about women’s attitudes towards a hypothetical pediatric biobank. Am J Med Genet A 146A(3):297–304

    Article  PubMed  Google Scholar 

  • Ormond KE, Banuvar S, Daly A, Iris M, Minogue J, Elias S (2009) Information preferences of high literacy pregnant women regarding informed consent models for genetic carrier screening. Patient Educ Couns 75(2):244–250

    Article  PubMed  CAS  Google Scholar 

  • Pulley JM, Brace MM, Bernard GR, Masys DR (2008) Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Bank 9(1):55–65

    Article  PubMed  Google Scholar 

  • Rose AL, Peters N, Shea JA, Armstrong K (2005) Attitudes and misconceptions about predictive genetic testing for cancer risk. Community Genet 8(3):145–151

    PubMed  Google Scholar 

  • Salvaterra E, Giorda R, Bassi MT, Borgatti R, Knudsen LE, Martinuzzi A, Nobile M, Pozzoli U, Ramelli GP, Reni GL, Rivolta D, Stazi MA, Strazzer S, Thijs C, Toccaceli V, Trabacca A, Turconi AC, Zanini S, Zucca C, Bresolin N, Lenzi On Behalf Of The Pediatric Biobank Elsi Working Group L (2012) Pediatric biobanking: a pilot qualitative survey of practices, rules, and researcher opinions in ten European countries. Biopreserv Biobank 10(1):29–36

  • Salvaterra E, Locatelli F, Strazzer S, Borgatti R, D'Angelo G, Lenzi L (2014) Paediatric biobanks: opinions, feelings and attitudes of parents towards the specimen donation of their sick children to a hypothetical biobank. Pathobiology. 81(5–6):304–308

    PubMed  Google Scholar 

  • Samuel J, Knoppers BM, Avard D (2012) Paediatric biobanks: what makes them so unique? J Paediatr Child Health 48(2):E1–E3

    Article  PubMed  Google Scholar 

  • Singer E, Antonucci T, Van Hoewyk J (2004) Racial and ethnic variations in knowledge and attitudes about genetic testing. Genet Test 8(1):31–43

    Article  PubMed  Google Scholar 

  • Williams BA, Wolf LE (2013) Biobanking, consent, and certificates of confidentiality: does the ANPRM muddy the water? J Law Med Ethics 41(2):440–453

    Article  PubMed  PubMed Central  Google Scholar 

  • Wolf LE, Patel MJ, Williams Tarver BA, Austin JL, Dame LA, Beskow LM (2015) Certificates of confidentiality: protecting human subject research data in law and practice. J Law Med Ethics 43(3):594–609

    PubMed  PubMed Central  Google Scholar 

  • Zimmerman RK, Tabbarah M, Nowalk MP, Raymund M, Jewell IK, Wilson SA, Ricci EM (2006) Racial differences in beliefs about genetic screening among patients at inner-city neighborhood health centers. J Natl Med Assoc 98(3):370–377

    PubMed  PubMed Central  Google Scholar 

Download references

Funding

This work was funded from a grant from the Department of Pediatrics at the University of New Mexico Health Sciences Center for the first author.

Author information

Authors and Affiliations

  1. Pediatrics, University of Mississippi Medical Center, 2500 N State St, Jackson, MS, 39216-4505, USA

    Renate D. Savich & Robert D. Annett

  2. College of Nursing, University of New Mexico, Albuquerque, NM, USA

    Beth B Tigges

  3. School of Public Health, University of Michigan, Ann Arbor, MI, USA

    Lisbeth Iglesias Rios

  4. Department of Family and Community Medicine, University of New Mexico Health Sciences Center, Albuquerque, NM, USA

    Joanne McCloskey

  5. College of Population Health, University of New Mexico Health Sciences Center, Albuquerque, NM, USA

    Kristine Tollestrup

Authors
  1. Renate D. Savich
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Beth B Tigges
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Lisbeth Iglesias Rios
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Joanne McCloskey
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Kristine Tollestrup
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Robert D. Annett
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Robert D. Annett.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Savich, R.D., Tigges, B.B., Rios, L.I. et al. Willingness of women to participate in obstetrical and pediatric research involving biobanks. J Community Genet 11, 215–223 (2020). https://doi.org/10.1007/s12687-019-00446-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-019-00446-3

Keywords

Search

Navigation