IU Indianapolis ScholarWorks :: Browsing by Author "Hartsock, Jane A."

Browsing by Author "Hartsock, Jane A."

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Anticipatory Waivers of Consent for Pediatric Biobanking
(Wiley, 2019-03) Hartsock, Jane A.; Schwartz, Peter H.; Waltz, Amy C.; Ott, Mary A.; Medicine, School of Medicine
As pediatric biobank research grows, additional guidance will be needed about whether researchers should always obtain consent from participants when they reach the legal age of majority. Biobanks struggle with a range of practical and ethical issues related to this question. We propose a framework for the use of anticipatory waivers of consent that is empirically rooted in research that shows that children and adolescents are often developmentally capable of meaningful deliberation about the risks and benefits of participation in research. Accordingly, bright‐line legal concepts of majority or competency do not accurately capture the emerging capacity for autonomous decision‐making of many pediatric research participants and unnecessarily complicate the issues about contacting participants at the age of majority to obtain consent for the continued or first use of their biospecimens that were obtained during childhood. We believe the proposed framework provides an ethically sound balance between the concern for potential exploitation of vulnerable populations, the impetus for the federal regulations governing research with children, and the need to conduct valuable research in the age of genomic medicine.
Development of Written Materials for Participants in an Alzheimer's Disease and Related Dementias Screening Trial
(Sage, 2022-04-12) Head, Katharine J.; Hartsock, Jane A.; Bakas, Tamilyn; Boustani, Malaz A.; Schroeder, Matthew; Fowler, Nicole R.; Communication Studies, School of Liberal Arts
Given that participants' experiences in clinical trials include a variety of communication touchpoints with clinical trial staff, these communications should be designed in a way that enhances the participant experience by paying attention to the self-determination theoretical concepts of competence, autonomy, and relatedness. In this feature, we argue that clinical trial teams need to consider the importance of how they design their written participant communication materials, and we explain in detail the process our multidisciplinary team took to design written materials for the patient and family caregiver participants in our Alzheimer's disease and related dementias (ADRD) screening trial. This article concludes with suggested guidance and steps for other clinical trial teams.
The First English Translation of the Ebers Papyrus
(2023-03-01) Halverson, Colin M.E.; Hartsock, Jane A.
Presentation slides for lecture delivered by Colin Halverson, PhD (Faculty Investigator, Indiana University Center for Bioethics) and Jane Hartsock, JD, MA (Director of the Department of Clinical and Organizational Ethics, Indiana University Health) on March 1, 2023. While the Ebers Papyrus is famous as one of the oldest and most complete contemporary perspectives on ancient Egyptian healing practices, little has yet been said about the biography of its first English-language translator, Dr. Carl H. von Klein. Von Klein, a German immigrant and surgeon in the American Midwest, and his linguist daughter Edith Zitelmann spent twenty-some years meticulously translating and annotating the papyrus, but the manuscript was ultimately destroyed. In this talk, Hartsock and Halverson examine the convoluted and dramatic history of the Ebers Papyrus and its “rediscovery” by Edwin Smith, and discuss the equally convoluted and dramatic societal- and personal-scale forces that thwarted von Klein and Zitelmann’s efforts to translate it. Presentation recording available online: https://purl.dlib.indiana.edu/iudl/media/019s06b61s
How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
(BMJ, 2018) Kirkman, Anna Obergfell; Hartsock, Jane A.; Torke, Alexia M.; Medical Humanities and Health Studies, School of Liberal Arts
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent’s preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
International Travel for Living Donor Kidney Donation: A Proposal for Focused Screening of Vulnerable Groups
(Wolters Kluwer, 2019-07) Hartsock, Jane A.; Helft, Paul R.; Medicine, School of Medicine
As the gap between organ donors and patients on the recipient waiting list grows, residents of the US who are in need of kidney transplantation occasionally contract with living donors from outside the US. Those donors then travel to the US to undergo living donor kidney donation at US transplant centers. This practice is not limited to the US and occurs with some regularity around the world. However, there is very little written about this practice from the perspective of the US transplant system, and there is little in the way of guidance (either legal or ethical) to assist centers that accommodate it in distinguishing between ethically permissible travel for transplant and what could potentially be human trafficking for organ removal. This paper will present an ethical analysis of travel for organ donation with particular attention to lessons that can be drawn from living donor donation in other countries. This inquiry is particularly germane because OPTN has promulgated guidelines with respect to obligations owed to living donors, but those guidelines appear to assume that the donor is a US resident. The critical question then, is whether and/or to what extent those guidelines are applicable to the instant scenario in which the living donor is a non-resident. In addition, this paper addresses several critical ethical concerns implicated by the often vulnerable populations from which donors are drawn. Finally, this paper proposes that focused inquiry by transplant centers is necessary when donors are non-residents.
Liver Allocation to Non-Citizen Non-Residents: An Ethical Framework for a Last-In-Line Approach
(Wiley, 2016-06) Hartsock, Jane A.; Ivy, Steven; Helft, Paul R.; Department of Medicine, IU School of Medicine
The incidence of non-U.S. citizen non-U.S. resident patients coming to the United States specifically for deceased donor liver transplantation raises compelling ethical questions that require careful consideration. The inclusion of these often financially and/or socially privileged patients in the pool of potential candidates for an absolutely scarce and life-saving liver transplant may exacerbate disparities already existing in deceased donor liver allocation. In addition, their inclusion on organ transplant waiting lists conflicts with recognized ethical principles of justice and reciprocity. Moreover, preliminary data suggest that public awareness of this practice could discourage organ donation, thereby worsening an already profound supply–demand gulf. Finally, U.S. organ allocation policies and statutes are out of step with recently promulgated international transplant guidelines, which prioritize self-sufficiency of organ programs. This article analyzes each of these ethical conflicts within the context of deceased donor liver transplantation and recommends policy changes that align the United States with international practices that discourage this scenario.
A National Survey Assessing SARS-CoV-2 Vaccination Intentions: Implications for Future Public Health Communication Efforts
(SAGE Publications, 2020-09-23) Head, Katharine J.; Kasting, Monica L.; Sturm, Lynne A.; Hartsock, Jane A.; Zimet, Gregory D.; Communication Studies, School of Liberal Arts
With SARS-CoV-2 vaccines under development, research is needed to assess intention to vaccinate. We conducted a survey (N = 3,159) with U.S. adults in May 2020 assessing SARS-CoV-2 vaccine intentions, intentions with a provider recommendation, and sociodemographic and psychosocial variables. Participants had high SARS-CoV-2 vaccine intentions (M = 5.23/7-point scale), which increased significantly with a provider recommendation (M = 5.47). Hierarchical linear regression showed that less education and working in health care were associated with lower intent, and liberal political views, altruism, and COVID-19-related health beliefs were associated with higher intent. This work can inform interventions to increase vaccine uptake, ultimately reducing COVID-19-related morbidity and mortality.
Perceptions of the ethical permissibility of strict travel restrictions to mitigate transmission of SARS-CoV-2
(Elsevier, 2022) Hartsock, Jane A.; Head, Katharine J.; Kasting, Monica L.; Sturm, Lynne; Zimet, Gregory; Communication Studies, School of Liberal Arts
Although there has been extensive exploration of public opinion surrounding many non-pharmaceutical interventions (NPIs) aimed at mitigating transmission of SARS-CoV-2 (e.g. mask-wearing and social distancing), there has been less discussion of the public's perception of the ethical appropriateness other NPIs. This paper presents the results of a survey of U.S. adults' opinions of the ethical permissibility of both state-to-state and international travel restrictions to mitigate transmission of SARS-CoV-2. Our research revealed overall high agreement with the ethical permissibility of both state-to-state and international travel restrictions, though we saw significant difference across political party affiliation and conservative/liberal ideologies. Other factors associated with agreement with state-to-state travel restrictions included increasing education, increasing income, and both high and low commitment altruism. When considering international travel restrictions, income, education, and low commitment altruism were associated with increased agreement with the ethical permissibility of international travel restrictions. Ethical analysis and implications are explored.
Public perceptions of the effectiveness of recommended non-pharmaceutical intervention behaviors to mitigate the spread of SARS-CoV-2
(PloS, 2020) Kasting, Monica L.; Head, Katharine J.; Hartsock, Jane A.; Sturm, Lynne; Zimet, Gregory D.; Pediatrics, School of Medicine
Background The COVID-19 pandemic is an unprecedented public health threat, both in scope and response. With no vaccine available, the public is advised to practice non-pharmaceutical interventions (NPI) including social distancing, mask-wearing, and washing hands. However, little is known about public perceptions of the effectiveness of these measures, and high perceived effectiveness is likely to be critical in order to achieve widespread adoption of NPI. Methods In May 2020, we conducted a cross-sectional survey among U.S. adults (N = 3,474). The primary outcome was a six-item measure assessing perceived effectiveness of recommended behaviors to prevent SARS-CoV-2 infection from 1 (not at all effective) to 5 (extremely effective). The sample was divided into “higher” and “lower” perceived effectiveness groups. Covariates included demographics, healthcare characteristics, and health beliefs. Variables that were significant at p<0.01 in bivariate analyses were entered into a multivariable logistic regression and a best-fit model was created using a cutoff of p<0.01 to stay in the model. Results Mean age was 45.5 years and most participants were non-Hispanic White (63%) and female (52.4%). The high perceived effectiveness group was slightly larger than the low perceived effectiveness group (52.7% vs. 47.3%). Almost all health belief variables were significant in the best-fit regression model. COVID-19-related worry (aOR = 1.82; 95% CI = 1.64–2.02), and perceived threat to physical health (aOR = 1.32; 95% CI = 1.20–1.45) were positively associated with perceived effectiveness while perceived severity of COVID-19 (0.84; 95% CI = 0.73–0.96) and perceived likelihood of infection (0.85; 95% CI = 0.77–0.94) switched directions in the adjusted model and were negatively associated with perceived effectiveness. Conclusions This research indicates people generally believe NPI are effective, but there was variability based on health beliefs and there are mixed rates of engagement in these behaviors. Public health efforts should focus on increasing perceived severity and threat of SARS-CoV-2-related disease, while promoting NPI as effective in reducing threat.
Public perceptions of the effectiveness of recommended non-pharmaceutical intervention behaviors to mitigate the spread of SARS-CoV-2
(Public Library of Science (PLOS), 2020-11-04) Kasting, Monica L.; Head, Katharine J.; Hartsock, Jane A.; Sturm, Lynne; Zimet, Gregory D.; Medicine, School of Medicine
Background: The COVID-19 pandemic is an unprecedented public health threat, both in scope and response. With no vaccine available, the public is advised to practice non-pharmaceutical interventions (NPI) including social distancing, mask-wearing, and washing hands. However, little is known about public perceptions of the effectiveness of these measures, and high perceived effectiveness is likely to be critical in order to achieve widespread adoption of NPI. Methods: In May 2020, we conducted a cross-sectional survey among U.S. adults (N = 3,474). The primary outcome was a six-item measure assessing perceived effectiveness of recommended behaviors to prevent SARS-CoV-2 infection from 1 (not at all effective) to 5 (extremely effective). The sample was divided into "higher" and "lower" perceived effectiveness groups. Covariates included demographics, healthcare characteristics, and health beliefs. Variables that were significant at p<0.01 in bivariate analyses were entered into a multivariable logistic regression and a best-fit model was created using a cutoff of p<0.01 to stay in the model. Results: Mean age was 45.5 years and most participants were non-Hispanic White (63%) and female (52.4%). The high perceived effectiveness group was slightly larger than the low perceived effectiveness group (52.7% vs. 47.3%). Almost all health belief variables were significant in the best-fit regression model. COVID-19-related worry (aOR = 1.82; 95% CI = 1.64-2.02), and perceived threat to physical health (aOR = 1.32; 95% CI = 1.20-1.45) were positively associated with perceived effectiveness while perceived severity of COVID-19 (0.84; 95% CI = 0.73-0.96) and perceived likelihood of infection (0.85; 95% CI = 0.77-0.94) switched directions in the adjusted model and were negatively associated with perceived effectiveness. Conclusions: This research indicates people generally believe NPI are effective, but there was variability based on health beliefs and there are mixed rates of engagement in these behaviors. Public health efforts should focus on increasing perceived severity and threat of SARS-CoV-2-related disease, while promoting NPI as effective in reducing threat.

Browsing by Author "Hartsock, Jane A."

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