Ethics of HBCD

• In Event: A longitudinal study of child development from pregnancy through first 10 years of life

Abstract

HBCD raises numerous ethical issues, in part due to the complexity and quantity of assessments to be performed with parents and children over ten years. This paper will focus on ethical issues arising when a study includes participants with multiple and overlapping vulnerabilities. HBCD will include pregnant persons, children, prisoners, and possibly some pregnant prisoners. During the study, some participants will become involved with child welfare authorities, experience poverty and lack of access to health care or other needed services, and/or develop mental health challenges such as postpartum depression. Some participants will have marginalized and stigmatized social identities, such as substance using or LGBT mothers. Some participants’ multiple social disadvantages will be densely interwoven in ways that collectively diminish their wellbeing.
Vulnerability is an ethical and regulatory concept in the U.S. and internationally. The term “vulnerable” is commonly used without definition; instead, the term is illustrated through examples. Scholars have counted at least 35 distinct “vulnerable populations” described in regulatory and policy documents (Racine, Braken-Roche, 2018). Unfortunately, these groups do not possess common characteristics from which to infer a coherent definition of vulnerability or a reason why vulnerability matters ethically. Furthermore, categorically labeling groups as vulnerable can stigmatize everyone identified as belonging to the group and perpetuate noxious stereotypes. Some scholars have begun framing vulnerability as contextual and relational, not an intrinsic or perpetual property of groups or their constituent individuals (Luna, 2009; Hurst, 2008; Fisher 1999).
Some scholars ground the ethical importance of vulnerability in group members’ lack of sufficient autonomy and their consequent susceptibility to coercion or undue influence on their decisions to participate in research. Such analyses suggest informed consent as the main locus for additional ethical protections. Other scholars emphasize vulnerable groups’ above average susceptibility to harm (physical, economic, social, or psychological) from research participation. Such analyses imply that study design should include special measures to identify and minimize harm when vulnerable populations are included. Other scholars conceptualize vulnerability as susceptibility to wrongful or unfair treatment, indicating that researchers should specially justify their selection of vulnerable study participants and implement special procedures to ensure their respectful treatment.
This paper will discuss how members of the HBCD consortium adopted a relational and integrative concept of vulnerability (Racine, Braken-Roche, 2018). The concept is integrative because we accepted all the above reasons why vulnerability matters in research. We also sought to expand our focus to the relationship between investigators and participants rather than “vulnerable populations” alone. The term “vulnerable population” obscures the insight that investigators are the primary people to whom research participants are vulnerable. Investigators are responsible for implementing policies, procedures, and organizational structures that facilitate our ability to identify and minimize potential harms specific to or more common among people with multiple, overlapping sources of social disadvantage. We are responsible for promoting such participants’ autonomy and treating them respectfully throughout the research process. This paper will describe concrete steps HBCD is taking to ethically include participants with multiple and overlapping social disadvantages.

Author

• Pilar N Ossorio, University of Wisconsin - Madison
  Presenting Author