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Papers by Deborah Barnbaum

Research Involving Participants with Cognitive Disability and Difference, 2019

Some people with cognitive disabilities are perceived to have compromised autonomy and thus unabl... more Some people with cognitive disabilities are perceived to have compromised autonomy and thus unable to consent to research participation. Individuals without cognitive disabilities are assumed to have the capacity to consent, despite falling prey to errors such as the therapeutic misconception, unrealistic optimism, or a lack of appreciation. The distinction between conceptual errors made by presumably “typical” individuals and those made by individuals with cognitive impairments may not be so different, and differences that do exist not so profound. Best practices call for a “meeting in the middle”—a recognition that “typical” individuals are not nearly as autonomous as we first think, and that the autonomy of “atypical” individuals is not as compromised as first appears. Two objections to this conclusion are addressed: exploitation, and a history of research abuses. Respecting persons with cognitive impairments means recognizing that their imperfect autonomy is not dissimilar from ...

第１章 自閉症の哲学入門（自閉症に関する心の理論説、ならびにそれと競合する諸仮説；人間の行動を説明する二つの仮説に対する自閉症からの試練—理論説とシミュレーション説 ほか） 第２章 自閉症的人生... more 第１章 自閉症の哲学入門（自閉症に関する心の理論説、ならびにそれと競合する諸仮説；人間の行動を説明する二つの仮説に対する自閉症からの試練—理論説とシミュレーション説 ほか） 第２章 自閉症的人生の価値（道徳共同体のメンバーに関するウォレンの立場；人間の能力に関するヌスバウムの立場 ほか） 第３章 自閉症と道徳理論（ケネット—ヒューム説に対する反駁；ケネットによるカント説の慎重な受容と、ベンによる拒否 ほか） 第４章 自閉症と遺伝学的技術（親の自律性と、遺伝学的技術の使用に対する反論の失敗；障害に関する社会構成論 ほか） 第５章 自閉症者に対する研究（カントの議論、功利主義の議論、そして原則主義と自閉症；自閉症と研究への同意能力 ほか）

Research Involving Participants with Cognitive Disability and Difference, 2019

This commentary engages two aspects of Kenneth A. Richman’s chapter “Autism, Autonomy, and Resear... more This commentary engages two aspects of Kenneth A. Richman’s chapter “Autism, Autonomy, and Research” (Chapter 5). First, several excellent points made in the chapter are discussed. Second, a distinction is introduced among types of research on persons with autism, a distinction that would strengthen his discussion. Drawing distinctions among the ways in which informed consent is confounded by symptoms of autism, as well as among types of research on autism, would further strengthen an already compelling chapter.

Newsletter on philosophy and medicine, 2003

This commentary considers three aspects of Britteny Howell and Karrie Shogren’s chapter “Differin... more This commentary considers three aspects of Britteny Howell and Karrie Shogren’s chapter “Differing Understandings of Informed Consent Held by Research Institutions, People With Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research” (Chapter 3). First, strengths of their discussion are considered. Second, a philosophical distinction amongst three justifications for surrogate decisions is elaborated upon, and is used conceptually to ground claims in Howell and Shogren’s chapter. Finally, it is suggested that illustrating this distinction to surrogate decision-makers may bolster the participation of persons with intellectual disabilities in research.

JAMA Ophthalmology

Importance The follow-up schedule for individuals with eyes treated with anti-vascular endothelia... more Importance The follow-up schedule for individuals with eyes treated with anti-vascular endothelial growth factor agents for proliferative diabetic retinopathy (PDR) requires that patients return frequently for monitoring and repeated treatment. The likelihood that a patient will comply should be a consideration in choosing a treatment approach. Objective To describe completion of scheduled examinations among participants assigned to intravitreous injections of ranibizumab for PDR in a multicenter randomized clinical trial. Design, Setting, and Participants This post hoc analysis evaluates data from a randomized clinical trial conducted at 55 US sites among 305 adults with proliferative diabetic retinopathy enrolled between February and December 2012. Both eyes were enrolled for 89 participants (1 eye to each study group), with a total of 394 study eyes. The final 2-year visit was completed in January 2015. Data were analyzed from April 2019 to July 2021. Interventions Ranibizumab injections for PDR or macular edema. Main Outcomes and Measures A long lapse in care of 8 or more weeks past a scheduled examination, dropout from follow-up, visual acuity at 5 years. Results Among 170 participants, the median age was 51 years, and 44.7% were female. Through 5 years of follow-up, 94 of 170 participants (55.3%) had 1 or more long lapse in care. Median time to the first long lapse was 210 weeks, and 69 of 94 participants (73.4%) returned for examination after the first long lapse. Fifty of 170 participants (29.4%) dropped out of follow-up by 5 years. Among the 120 participants who completed the 5-year examination, median change from baseline in visual acuity was -2 letters for participants who had 1 or more long lapse compared with +5 letters for those without a long lapse (P = .02). After multivariable adjustment, the odds ratio (95% CI) for baseline associations with 1 or more long lapse was 1.21 (1.03-1.43) for each 5-letter decrement in visual acuity score, 2.19 (1.09-4.38) for neovascularization of the disc and elsewhere, and 3.48 (1.38-8.78) for no prior laser treatment for diabetic macular edema. Conclusions and Relevance Over 5 years, approximately half of the participants assigned to ranibizumab for PDR had a long lapse in care despite substantial effort by the DRCR Retina Network to facilitate timely completion of examinations. The likelihood of a long lapse in care during long-term follow-up needs to be considered when choosing treatment for PDR. Trial Registration ClinicalTrials.gov Identifier: NCT01489189.

JAMA

Importance Alteration in lung microbes is associated with disease progression in idiopathic pulmo... more Importance Alteration in lung microbes is associated with disease progression in idiopathic pulmonary fibrosis. Objective To assess the effect of antimicrobial therapy on clinical outcomes. Design, Setting, and Participants Pragmatic, randomized, unblinded clinical trial conducted across 35 US sites. A total of 513 patients older than 40 years were randomized from August 2017 to June 2019 (final follow-up was January 2020). Interventions Patients were randomized in a 1:1 allocation ratio to receive antimicrobials (n = 254) or usual care alone (n = 259). Antimicrobials included co-trimoxazole (trimethoprim 160 mg/sulfamethoxazole 800 mg twice daily plus folic acid 5 mg daily, n = 128) or doxycycline (100 mg once daily if body weight <50 kg or 100 mg twice daily if ≥50 kg, n = 126). No placebo was administered in the usual care alone group. Main Outcomes and Measures The primary end point was time to first nonelective respiratory hospitalization or all-cause mortality. Results Among the 513 patients who were randomized (mean age, 71 years; 23.6% women), all (100%) were included in the analysis. The study was terminated for futility on December 18, 2019. After a mean follow-up time of 13.1 months (median, 12.7 months), a total of 108 primary end point events occurred: 52 events (20.4 events per 100 patient-years [95% CI, 14.8-25.9]) in the usual care plus antimicrobial therapy group and 56 events (18.4 events per 100 patient-years [95% CI, 13.2-23.6]) in the usual care group, with no significant difference between groups (adjusted HR, 1.04 [95% CI, 0.71-1.53; P = .83]. There was no statistically significant interaction between the effect of the prespecified antimicrobial agent (co-trimoxazole vs doxycycline) on the primary end point (adjusted HR, 1.15 [95% CI 0.68-1.95] in the co-trimoxazole group vs 0.82 [95% CI, 0.46-1.47] in the doxycycline group; P = .66). Serious adverse events occurring at 5% or greater among those treated with usual care plus antimicrobials vs usual care alone included respiratory events (16.5% vs 10.0%) and infections (2.8% vs 6.6%); adverse events of special interest included diarrhea (10.2% vs 3.1%) and rash (6.7% vs 0%). Conclusions and Relevance Among adults with idiopathic pulmonary fibrosis, the addition of co-trimoxazole or doxycycline to usual care, compared with usual care alone, did not significantly improve time to nonelective respiratory hospitalization or death. These findings do not support treatment with these antibiotics for the underlying disease. Trial Registration ClinicalTrials.gov Identifier: NCT02759120.

Scientific Study of Literature

Previous studies suggest that narrative fiction promotes social justice by increasing empathy, bu... more Previous studies suggest that narrative fiction promotes social justice by increasing empathy, but critics have argued that the partiality of empathy severely limits its effectiveness as an engine of social justice, and that what needs to be developed is universal compassion rather than empathy. We created Compassion-Cultivating Pedagogy (CCP) to target the development of two social-cognition capabilities that entail compassion: (1) recognition of self-other overlap and (2) cognizance of the situational, uncontrollable causes of bad character, bad behavior, and bad life-outcomes. Employing a pre/post within- and between-subjects design, we found that students in the CCP classes, but not students in conventionally taught classes, improved in these two areas of social cognition and also exhibited increased preference for compassionate social policies for stigmatized groups. This finding suggests that pedagogy can play a significant role in literature’s contribution to social justice, ...

Research Involving Participants with Cognitive Disability and Difference, 2019

Some people with cognitive disabilities are perceived to have compromised autonomy and thus unabl... more Some people with cognitive disabilities are perceived to have compromised autonomy and thus unable to consent to research participation. Individuals without cognitive disabilities are assumed to have the capacity to consent, despite falling prey to errors such as the therapeutic misconception, unrealistic optimism, or a lack of appreciation. The distinction between conceptual errors made by presumably “typical” individuals and those made by individuals with cognitive impairments may not be so different, and differences that do exist not so profound. Best practices call for a “meeting in the middle”—a recognition that “typical” individuals are not nearly as autonomous as we first think, and that the autonomy of “atypical” individuals is not as compromised as first appears. Two objections to this conclusion are addressed: exploitation, and a history of research abuses. Respecting persons with cognitive impairments means recognizing that their imperfect autonomy is not dissimilar from ...

第１章 自閉症の哲学入門（自閉症に関する心の理論説、ならびにそれと競合する諸仮説；人間の行動を説明する二つの仮説に対する自閉症からの試練—理論説とシミュレーション説 ほか） 第２章 自閉症的人生... more 第１章 自閉症の哲学入門（自閉症に関する心の理論説、ならびにそれと競合する諸仮説；人間の行動を説明する二つの仮説に対する自閉症からの試練—理論説とシミュレーション説 ほか） 第２章 自閉症的人生の価値（道徳共同体のメンバーに関するウォレンの立場；人間の能力に関するヌスバウムの立場 ほか） 第３章 自閉症と道徳理論（ケネット—ヒューム説に対する反駁；ケネットによるカント説の慎重な受容と、ベンによる拒否 ほか） 第４章 自閉症と遺伝学的技術（親の自律性と、遺伝学的技術の使用に対する反論の失敗；障害に関する社会構成論 ほか） 第５章 自閉症者に対する研究（カントの議論、功利主義の議論、そして原則主義と自閉症；自閉症と研究への同意能力 ほか）

Research Involving Participants with Cognitive Disability and Difference, 2019

This commentary engages two aspects of Kenneth A. Richman’s chapter “Autism, Autonomy, and Resear... more This commentary engages two aspects of Kenneth A. Richman’s chapter “Autism, Autonomy, and Research” (Chapter 5). First, several excellent points made in the chapter are discussed. Second, a distinction is introduced among types of research on persons with autism, a distinction that would strengthen his discussion. Drawing distinctions among the ways in which informed consent is confounded by symptoms of autism, as well as among types of research on autism, would further strengthen an already compelling chapter.

Newsletter on philosophy and medicine, 2003

This commentary considers three aspects of Britteny Howell and Karrie Shogren’s chapter “Differin... more This commentary considers three aspects of Britteny Howell and Karrie Shogren’s chapter “Differing Understandings of Informed Consent Held by Research Institutions, People With Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research” (Chapter 3). First, strengths of their discussion are considered. Second, a philosophical distinction amongst three justifications for surrogate decisions is elaborated upon, and is used conceptually to ground claims in Howell and Shogren’s chapter. Finally, it is suggested that illustrating this distinction to surrogate decision-makers may bolster the participation of persons with intellectual disabilities in research.

JAMA Ophthalmology

Importance The follow-up schedule for individuals with eyes treated with anti-vascular endothelia... more Importance The follow-up schedule for individuals with eyes treated with anti-vascular endothelial growth factor agents for proliferative diabetic retinopathy (PDR) requires that patients return frequently for monitoring and repeated treatment. The likelihood that a patient will comply should be a consideration in choosing a treatment approach. Objective To describe completion of scheduled examinations among participants assigned to intravitreous injections of ranibizumab for PDR in a multicenter randomized clinical trial. Design, Setting, and Participants This post hoc analysis evaluates data from a randomized clinical trial conducted at 55 US sites among 305 adults with proliferative diabetic retinopathy enrolled between February and December 2012. Both eyes were enrolled for 89 participants (1 eye to each study group), with a total of 394 study eyes. The final 2-year visit was completed in January 2015. Data were analyzed from April 2019 to July 2021. Interventions Ranibizumab injections for PDR or macular edema. Main Outcomes and Measures A long lapse in care of 8 or more weeks past a scheduled examination, dropout from follow-up, visual acuity at 5 years. Results Among 170 participants, the median age was 51 years, and 44.7% were female. Through 5 years of follow-up, 94 of 170 participants (55.3%) had 1 or more long lapse in care. Median time to the first long lapse was 210 weeks, and 69 of 94 participants (73.4%) returned for examination after the first long lapse. Fifty of 170 participants (29.4%) dropped out of follow-up by 5 years. Among the 120 participants who completed the 5-year examination, median change from baseline in visual acuity was -2 letters for participants who had 1 or more long lapse compared with +5 letters for those without a long lapse (P = .02). After multivariable adjustment, the odds ratio (95% CI) for baseline associations with 1 or more long lapse was 1.21 (1.03-1.43) for each 5-letter decrement in visual acuity score, 2.19 (1.09-4.38) for neovascularization of the disc and elsewhere, and 3.48 (1.38-8.78) for no prior laser treatment for diabetic macular edema. Conclusions and Relevance Over 5 years, approximately half of the participants assigned to ranibizumab for PDR had a long lapse in care despite substantial effort by the DRCR Retina Network to facilitate timely completion of examinations. The likelihood of a long lapse in care during long-term follow-up needs to be considered when choosing treatment for PDR. Trial Registration ClinicalTrials.gov Identifier: NCT01489189.

JAMA

Importance Alteration in lung microbes is associated with disease progression in idiopathic pulmo... more Importance Alteration in lung microbes is associated with disease progression in idiopathic pulmonary fibrosis. Objective To assess the effect of antimicrobial therapy on clinical outcomes. Design, Setting, and Participants Pragmatic, randomized, unblinded clinical trial conducted across 35 US sites. A total of 513 patients older than 40 years were randomized from August 2017 to June 2019 (final follow-up was January 2020). Interventions Patients were randomized in a 1:1 allocation ratio to receive antimicrobials (n = 254) or usual care alone (n = 259). Antimicrobials included co-trimoxazole (trimethoprim 160 mg/sulfamethoxazole 800 mg twice daily plus folic acid 5 mg daily, n = 128) or doxycycline (100 mg once daily if body weight <50 kg or 100 mg twice daily if ≥50 kg, n = 126). No placebo was administered in the usual care alone group. Main Outcomes and Measures The primary end point was time to first nonelective respiratory hospitalization or all-cause mortality. Results Among the 513 patients who were randomized (mean age, 71 years; 23.6% women), all (100%) were included in the analysis. The study was terminated for futility on December 18, 2019. After a mean follow-up time of 13.1 months (median, 12.7 months), a total of 108 primary end point events occurred: 52 events (20.4 events per 100 patient-years [95% CI, 14.8-25.9]) in the usual care plus antimicrobial therapy group and 56 events (18.4 events per 100 patient-years [95% CI, 13.2-23.6]) in the usual care group, with no significant difference between groups (adjusted HR, 1.04 [95% CI, 0.71-1.53; P = .83]. There was no statistically significant interaction between the effect of the prespecified antimicrobial agent (co-trimoxazole vs doxycycline) on the primary end point (adjusted HR, 1.15 [95% CI 0.68-1.95] in the co-trimoxazole group vs 0.82 [95% CI, 0.46-1.47] in the doxycycline group; P = .66). Serious adverse events occurring at 5% or greater among those treated with usual care plus antimicrobials vs usual care alone included respiratory events (16.5% vs 10.0%) and infections (2.8% vs 6.6%); adverse events of special interest included diarrhea (10.2% vs 3.1%) and rash (6.7% vs 0%). Conclusions and Relevance Among adults with idiopathic pulmonary fibrosis, the addition of co-trimoxazole or doxycycline to usual care, compared with usual care alone, did not significantly improve time to nonelective respiratory hospitalization or death. These findings do not support treatment with these antibiotics for the underlying disease. Trial Registration ClinicalTrials.gov Identifier: NCT02759120.

Scientific Study of Literature

Previous studies suggest that narrative fiction promotes social justice by increasing empathy, bu... more Previous studies suggest that narrative fiction promotes social justice by increasing empathy, but critics have argued that the partiality of empathy severely limits its effectiveness as an engine of social justice, and that what needs to be developed is universal compassion rather than empathy. We created Compassion-Cultivating Pedagogy (CCP) to target the development of two social-cognition capabilities that entail compassion: (1) recognition of self-other overlap and (2) cognizance of the situational, uncontrollable causes of bad character, bad behavior, and bad life-outcomes. Employing a pre/post within- and between-subjects design, we found that students in the CCP classes, but not students in conventionally taught classes, improved in these two areas of social cognition and also exhibited increased preference for compassionate social policies for stigmatized groups. This finding suggests that pedagogy can play a significant role in literature’s contribution to social justice, ...