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  1. Article ; Online: Genomics and Infectious Diseases: Expert Perspectives on Public Health Considerations regarding Actionability and Privacy.

    Walker, Alexis / Boyce, Angie / Duggal, Priya / Thio, Chloe L / Geller, Gail

    Ethics & human research

    2020  Volume 42, Issue 3, Page(s) 30–40

    Abstract: There is growing evidence that human genetics plays a significant role in shaping human responses to infectious diseases. For instance, individuals' genetic susceptibility or resistance to infectious disease is likely to affect disease transmission. Yet ... ...

    Abstract There is growing evidence that human genetics plays a significant role in shaping human responses to infectious diseases. For instance, individuals' genetic susceptibility or resistance to infectious disease is likely to affect disease transmission. Yet little attention has been paid to the ethical, legal, and social implications of research in genomics and infectious disease, despite the unique ethical issues that arise in this arena. This article presents results from a pilot study exploring ethics in research on human genetics and response to HIV and other infectious diseases and is focused on perspectives from expert stakeholders. Whereas chairs of institutional review boards, biobank directors, and researchers in genomics and infectious disease expressed similar views about research privacy in the context of a public health emergency, they expressed different perspectives about the role that public health considerations ought to play in the return of individual results to research participants. These perspectives highlight the need to emphasize the importance of broad dialogue for helping various parties navigate the ethically complex current and future challenges of genomics and infectious disease research.
    MeSH term(s) Cohort Studies ; Communicable Diseases/genetics ; Ethics Committees, Research/ethics ; Genomics/ethics ; Humans ; Middle Aged ; Pilot Projects ; Privacy ; Public Health/ethics ; Research ; Stakeholder Participation
    Keywords covid19
    Language English
    Publishing date 2020-05-18
    Publishing country United States
    Document type Journal Article
    ISSN 2578-2363
    ISSN (online) 2578-2363
    DOI 10.1002/eahr.500051
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  2. Article ; Online: The Ethics of Precision Rationing: Human Genetics and the Need for Debate on Stratifying Access to Medication.

    Walker, Alexis / Boyce, Angie / Duggal, Priya / Thio, Chloe L / Geller, Gail

    Public health genomics

    2020  Volume 23, Issue 3-4, Page(s) 149–154

    Abstract: Rising prices for new, transformative therapies are challenging health systems around the world, leading many payers and providers to begin rationing access to treatments, even in the countries that have been most resistant to doing so. This is the case ... ...

    Abstract Rising prices for new, transformative therapies are challenging health systems around the world, leading many payers and providers to begin rationing access to treatments, even in the countries that have been most resistant to doing so. This is the case for direct-acting antivirals (DAAs) for the treatment of hepatitis C virus (HCV). However, little attention has been paid to the increasing role that human genetics might play in rationing decisions. Researchers have already proposed that genetic markers associated with spontaneous HCV clearance could be used to restrict DAA access for some patients, although treatment would be medically beneficial for those patients. Would such forms of rationing present a form of genetic discrimination? And what of the public health implications of these approaches? Here we present an ethical analysis of such proposals for "precision rationing" and raise 4 key areas of concern. We argue that ethical issues arising in this area are not substantively different from the pressing ethical issues regarding rationing and discrimination more broadly, but provide important impetus for motivating broad public debate to find ethically sound ways of managing genomics and new expensive medications.
    MeSH term(s) Antiviral Agents/economics ; Antiviral Agents/therapeutic use ; Genetic Phenomena ; Genetic Testing/methods ; Health Care Rationing/ethics ; Health Care Rationing/methods ; Health Services Accessibility ; Hepatitis C/drug therapy ; Hepatitis C/economics ; Hepatitis C/genetics ; Human Genetics/methods ; Human Genetics/trends ; Humans ; Patient Selection
    Chemical Substances Antiviral Agents
    Language English
    Publishing date 2020-06-09
    Publishing country Switzerland
    Document type News ; Research Support, N.I.H., Extramural
    ZDB-ID 2457023-0
    ISSN 1662-8063 ; 1662-4246
    ISSN (online) 1662-8063
    ISSN 1662-4246
    DOI 10.1159/000508141
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  3. Article ; Online: Direct-Acting Antivirals and Hepatitis C: The Ethics of Price and Rationing by Genotype.

    Walker, Alexis / Boyce, Angie / Geller, Gail / Thio, Chloe L / Kahn, Jeffrey P

    Clinical infectious diseases : an official publication of the Infectious Diseases Society of America

    2018  Volume 67, Issue 6, Page(s) 983–984

    MeSH term(s) Alleles ; Antiviral Agents ; Female ; Genotype ; Hepacivirus/genetics ; Hepatitis C ; Hepatitis C, Chronic ; Humans ; Interleukins ; Postpartum Period ; Viral Load
    Chemical Substances Antiviral Agents ; Interleukins
    Language English
    Publishing date 2018-03-29
    Publishing country United States
    Document type Letter ; Comment
    ZDB-ID 1099781-7
    ISSN 1537-6591 ; 1058-4838
    ISSN (online) 1537-6591
    ISSN 1058-4838
    DOI 10.1093/cid/ciy239
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    Zs.MO 480: Show issues

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  4. Article ; Online: Genomics in the era of COVID-19: ethical implications for clinical practice and public health.

    Geller, Gail / Duggal, Priya / Thio, Chloe L / Mathews, Debra / Kahn, Jeffrey P / Maragakis, Lisa L / Garibaldi, Brian T

    Genome medicine

    2020  Volume 12, Issue 1, Page(s) 95

    Abstract: Genomic studies of patients with COVID-19, or exposed to it, are underway to delineate host factors associated with variability in susceptibility, infectivity, and disease severity. Here, we highlight the ethical implications-both potential benefits and ... ...

    Abstract Genomic studies of patients with COVID-19, or exposed to it, are underway to delineate host factors associated with variability in susceptibility, infectivity, and disease severity. Here, we highlight the ethical implications-both potential benefits and harms-of genomics for clinical practice and public health in the era of COVID-19.
    MeSH term(s) Betacoronavirus ; COVID-19 ; Clinical Decision-Making/methods ; Coronavirus Infections/pathology ; Coronavirus Infections/therapy ; Genetic Predisposition to Disease/genetics ; Genetic Testing/ethics ; Genomics/ethics ; Genomics/methods ; Humans ; Pandemics ; Pneumonia, Viral/pathology ; Pneumonia, Viral/therapy ; Public Health/ethics ; Public Health/methods ; SARS-CoV-2
    Keywords covid19
    Language English
    Publishing date 2020-11-09
    Publishing country England
    Document type Journal Article ; Research Support, N.I.H., Extramural
    ZDB-ID 2484394-5
    ISSN 1756-994X ; 1756-994X
    ISSN (online) 1756-994X
    ISSN 1756-994X
    DOI 10.1186/s13073-020-00792-9
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Enhanced Integration of TB Services in Reproductive Maternal Newborn and Child Health (RMNCH) Settings in Eswatini.

    Hartsough, Kieran / Teasdale, Chloe A / Shongwe, Siphesihle / Geller, Amanda / Pimentel De Gusmao, Eduarda / Dlamini, Phumzile / Mafukidze, Arnold / Pasipamire, Munyaradzi / Ao, Trong / Ryan, Caroline / Modi, Surbhi / Abrams, Elaine J / Howard, Andrea A

    PLOS global public health

    2022  Volume 2, Issue 4, Page(s) e0000217

    Abstract: Tuberculosis (TB) primarily affects women during their reproductive years and contributes to maternal mortality and poor pregnancy outcomes. For pregnant women living with HIV (WLHIV), TB is the leading cause of non-obstetric maternal mortality, and ... ...

    Abstract Tuberculosis (TB) primarily affects women during their reproductive years and contributes to maternal mortality and poor pregnancy outcomes. For pregnant women living with HIV (WLHIV), TB is the leading cause of non-obstetric maternal mortality, and pregnant WLHIV with TB are at increased risk of transmitting both TB and HIV to their infants. TB diagnosis among pregnant women, particularly WLHIV, remains challenging, and TB preventive treatment (TPT) coverage among pregnant WLHIV is limited. This project aimed to strengthen integrated TB and reproductive, maternal, neonatal and child health (RMNCH) services in Eswatini to improve screening and treatment for TB disease, TPT uptake and completion among women receiving RMNCH services. The project was conducted from April-December 2017 at four health facilities in Eswatini and introduced enhanced monitoring tools and on-site technical support in RMNCH services. We present data on TB case finding among women, and TPT coverage and completion among eligible WLHIV. A questionnaire (S1 Appendix) measured healthcare provider perspectives on the project after three months of project implementation, including feasibility of scaling-up integrated TB and RMNCH services. A total of 5,724 women (HIV-negative or WLHIV) were screened for active TB disease while attending RMNCH services; 53 (0.9%) were identified with presumptive TB, of whom 37 (70%) were evaluated for TB disease and 6 (0.1% of those screened) were diagnosed with TB. Among 1,950 WLHIV who screened negative for TB, 848 (43%) initiated TPT and 462 (54%) completed. Forty-three healthcare providers completed the questionnaire, and overall were highly supportive of integrated TB and RMNCH services. Integration of TB/HIV services in RMNCH settings was feasible and ensured high TB screening coverage among women of reproductive age, however, symptom screening identified few TB cases, and further studies should explore various screening algorithms and diagnostics that optimize case finding in this population. Interventions should focus on working with healthcare providers and patients to improve TPT initiation and completion rates.
    Language English
    Publishing date 2022-04-20
    Publishing country United States
    Document type Journal Article
    ISSN 2767-3375
    ISSN (online) 2767-3375
    DOI 10.1371/journal.pgph.0000217
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  6. Article ; Online: Personal Genetic Information about HIV: Research Participants' Views of Ethical, Social, and Behavioral Implications.

    Boyce, Angie / Walker, Alexis / Duggal, Priya / Thio, Chloe L / Geller, Gail

    Public health genomics

    2019  Volume 22, Issue 1-2, Page(s) 36–45

    Abstract: Background: Personal genetic information (PGI) about HIV is produced in research and entering the clinic and direct-to-consumer market, but little consideration has been given to ethical and social issues, public perspectives, and potential behavioral ... ...

    Abstract Background: Personal genetic information (PGI) about HIV is produced in research and entering the clinic and direct-to-consumer market, but little consideration has been given to ethical and social issues, public perspectives, and potential behavioral implications.
    Objectives: This research queried the views of research participants at risk for or infected with HIV, exploring their perspectives on HIV-related PGI and its ethical, social, and behavioral implications.
    Methods: We used focus groups to collect rich information about participants' perspectives on the ethical, social, and behavioral implications of PGI about HIV and host genetic research. We evaluated their reactions to three different types of genetic variants: those that made them more susceptible to HIV, more protected from or resistant to HIV, or more likely to transmit HIV to others.
    Results: Overall, participants wanted PGI about HIV. Their reasons included a mix of personal or family health benefit and benefit to others, which varied in emphasis depending on variant type. While susceptibility variant information was seen primarily in terms of personal or family health benefit, for transmissibility and protective variant information, benefit to others emerged as a major reason for wanting PGI about HIV. Participants thought transmissibility variant information would help them prevent others from becoming infected, and protective variant information would allow them to volunteer for targeted research to help treat, cure, or prevent HIV. Possible harms were raised regarding the tendencies among some individuals to increase risky behavior with modulations in perceived risk. Potential behavioral implications were seen as significant, though complex, reflecting multifaceted risk perceptions.
    Conclusions: Our study adds to the evidence that participants in genetic research, across disease type, have a strong desire for PGI. For participants in research on the genetics of HIV, and potentially other infectious diseases, their desire for PGI is grounded in a perceived duty not to infect others, where they feel a moral responsibility regarding research participation and behavior change. Wider dissemination of HIV-related PGI may well increase research participation, but could have mixed effects on risk behavior. More research is needed on the implications of different variant types of PGI beyond susceptibility factors, especially protective variants or resistance factors.
    MeSH term(s) Altruism ; Female ; Genetic Predisposition to Disease/psychology ; Genetic Privacy/ethics ; Genetic Privacy/psychology ; HIV Infections/genetics ; HIV Infections/psychology ; HIV Infections/transmission ; Health Knowledge, Attitudes, Practice ; Humans ; Male ; Middle Aged ; Morals ; Mutation/genetics ; Receptors, CCR5/genetics ; Research Personnel/psychology ; Risk Factors
    Chemical Substances CCR5 protein, human ; Receptors, CCR5
    Language English
    Publishing date 2019-08-28
    Publishing country Switzerland
    Document type Journal Article ; Research Support, N.I.H., Extramural
    ZDB-ID 2457023-0
    ISSN 1662-8063 ; 1662-4246
    ISSN (online) 1662-8063
    ISSN 1662-4246
    DOI 10.1159/000501672
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  7. Article ; Online: Genomics in the era of COVID-19

    Gail Geller / Priya Duggal / Chloe L. Thio / Debra Mathews / Jeffrey P. Kahn / Lisa L. Maragakis / Brian T. Garibaldi

    Genome Medicine, Vol 12, Iss 1, Pp 1-

    ethical implications for clinical practice and public health

    2020  Volume 4

    Abstract: Abstract Genomic studies of patients with COVID-19, or exposed to it, are underway to delineate host factors associated with variability in susceptibility, infectivity, and disease severity. Here, we highlight the ethical implications—both potential ... ...

    Abstract Abstract Genomic studies of patients with COVID-19, or exposed to it, are underway to delineate host factors associated with variability in susceptibility, infectivity, and disease severity. Here, we highlight the ethical implications—both potential benefits and harms—of genomics for clinical practice and public health in the era of COVID-19.
    Keywords COVID-19 ; Ethics ; Host genomics ; Medicine ; R ; Genetics ; QH426-470
    Language English
    Publishing date 2020-11-01T00:00:00Z
    Publisher BMC
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  8. Article ; Online: Enhanced Integration of TB Services in Reproductive Maternal Newborn and Child Health (RMNCH) Settings in Eswatini.

    Kieran Hartsough / Chloe A Teasdale / Siphesihle Shongwe / Amanda Geller / Eduarda Pimentel De Gusmao / Phumzile Dlamini / Arnold Mafukidze / Munyaradzi Pasipamire / Trong Ao / Caroline Ryan / Surbhi Modi / Elaine J Abrams / Andrea A Howard

    PLOS Global Public Health, Vol 2, Iss 4, p e

    2022  Volume 0000217

    Abstract: Tuberculosis (TB) primarily affects women during their reproductive years and contributes to maternal mortality and poor pregnancy outcomes. For pregnant women living with HIV (WLHIV), TB is the leading cause of non-obstetric maternal mortality, and ... ...

    Abstract Tuberculosis (TB) primarily affects women during their reproductive years and contributes to maternal mortality and poor pregnancy outcomes. For pregnant women living with HIV (WLHIV), TB is the leading cause of non-obstetric maternal mortality, and pregnant WLHIV with TB are at increased risk of transmitting both TB and HIV to their infants. TB diagnosis among pregnant women, particularly WLHIV, remains challenging, and TB preventive treatment (TPT) coverage among pregnant WLHIV is limited. This project aimed to strengthen integrated TB and reproductive, maternal, neonatal and child health (RMNCH) services in Eswatini to improve screening and treatment for TB disease, TPT uptake and completion among women receiving RMNCH services. The project was conducted from April-December 2017 at four health facilities in Eswatini and introduced enhanced monitoring tools and on-site technical support in RMNCH services. We present data on TB case finding among women, and TPT coverage and completion among eligible WLHIV. A questionnaire (S1 Appendix) measured healthcare provider perspectives on the project after three months of project implementation, including feasibility of scaling-up integrated TB and RMNCH services. A total of 5,724 women (HIV-negative or WLHIV) were screened for active TB disease while attending RMNCH services; 53 (0.9%) were identified with presumptive TB, of whom 37 (70%) were evaluated for TB disease and 6 (0.1% of those screened) were diagnosed with TB. Among 1,950 WLHIV who screened negative for TB, 848 (43%) initiated TPT and 462 (54%) completed. Forty-three healthcare providers completed the questionnaire, and overall were highly supportive of integrated TB and RMNCH services. Integration of TB/HIV services in RMNCH settings was feasible and ensured high TB screening coverage among women of reproductive age, however, symptom screening identified few TB cases, and further studies should explore various screening algorithms and diagnostics that optimize case finding in this population. Interventions ...
    Keywords Public aspects of medicine ; RA1-1270
    Subject code 360
    Language English
    Publishing date 2022-01-01T00:00:00Z
    Publisher Public Library of Science (PLoS)
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  9. Article ; Online: A study protocol for implementing Canadian Practice Guidelines for Treating Children and Adolescents with Eating Disorders.

    Couturier, Jennifer L / Kimber, Melissa / Ford, Catherine / Coelho, Jennifer S / Dimitropoulos, Gina / Kurji, Ayisha / Boman, Jonathan / Isserlin, Leanna / Bond, Jason / Soroka, Chelsea / Dominic, Anna / Boachie, Ahmed / McVey, Gail / Norris, Mark / Obeid, Nicole / Pilon, David / Spettigue, Wendy / Findlay, Sheri / Geller, Josie /
    Grewal, Seena / Gusella, Joanne / Jericho, Monique / Johnson, Natasha / Katzman, Debra / Chan, Natalie / Grande, Chloe / Nicula, Maria / Clause-Walford, Drew / Leclerc, Anick / Loewen, Rachel / Loewen, Techiya / Steinegger, Cathleen / Waite, Elizabeth / Webb, Cheryl / Brouwers, Melissa

    Implementation science communications

    2024  Volume 5, Issue 1, Page(s) 5

    Abstract: Background: Eating disorders have one of the highest mortality rates among psychiatric illnesses. Timely intervention is crucial for effective treatment, as eating disorders tend to be chronic and difficult to manage if left untreated. Clinical practice ...

    Abstract Background: Eating disorders have one of the highest mortality rates among psychiatric illnesses. Timely intervention is crucial for effective treatment, as eating disorders tend to be chronic and difficult to manage if left untreated. Clinical practice guidelines play a vital role in improving healthcare delivery, aiming to minimize variations in care and bridge the gap between research and practice. However, research indicates an active guideline implementation approach is crucial to effective uptake.
    Methods: Mixed methods will be used to inform and evaluate our guideline implementation approach. Semi-structured focus groups will be conducted in each of the eight provinces in Canada. Each focus group will comprise 8-10 key stakeholders, including clinicians, program administrators, and individuals with lived experience or caregivers. Qualitative data will be analyzed using conventional content analysis and the constant comparison technique and the results will be used to inform our implementation strategy. The study will then evaluate the effectiveness of our implementation approach through pre- and post-surveys, comparing changes in awareness, use, and impact of the guidelines in various stakeholder groups.
    Discussion: Through a multifaceted implementation strategy, involving the co-creation of educational materials, tailored training, and context-specific strategies, this study intends to enhance guideline uptake and promote adherence to evidence-based practices. Our study will also contribute valuable information on the impact of our implementation strategies.
    Language English
    Publishing date 2024-01-05
    Publishing country England
    Document type Journal Article
    ISSN 2662-2211
    ISSN (online) 2662-2211
    DOI 10.1186/s43058-023-00538-9
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  10. Article ; Online: Approaches to transitioning women into and out of prevention of mother-to-child transmission of HIV services for continued ART: a systematic review.

    Phillips, Tamsin K / Teasdale, Chloe A / Geller, Amanda / Ng'eno, Bernadette / Mogoba, Pheposadi / Modi, Surbhi / Abrams, Elaine J

    Journal of the International AIDS Society

    2020  Volume 24, Issue 1, Page(s) e25633

    Abstract: Introduction: Women living with HIV are required to transition into the prevention of mother-to-child transmission of HIV (PMTCT) services when they become pregnant and back to ART services after delivery. Transition can be a vulnerable time when many ... ...

    Abstract Introduction: Women living with HIV are required to transition into the prevention of mother-to-child transmission of HIV (PMTCT) services when they become pregnant and back to ART services after delivery. Transition can be a vulnerable time when many women are lost from HIV care yet there is little guidance on the optimal transition approaches to ensure continuity of care. We reviewed the available evidence on existing approaches to transitioning women into and out of PMTCT, outcomes following transition and factors influencing successful transition.
    Methods: We searched PubMed and SCOPUS, as well as abstracts from international HIV-focused meetings, from January 2006 to July 2020. Studies were included that examined three points of transition: pregnant women already on ART into PMTCT (transition 1), pregnant women living with HIV not yet on ART into treatment services (transition 2) and postpartum women from PMTCT into general ART services after delivery (transition 3). Results were grouped and reported as descriptions of transition approach, comparison of outcomes following transition and factors influencing successful transition.
    Results & discussion: Out of 1809 abstracts located, 36 studies (39 papers) were included in this review. Three studies included transition 1, 26 transition 2 and 17 transition 3. Approaches to transition were described in 26 studies and could be grouped into the provision of information at the point of transition (n = 8), strengthened communication or linkage of data between services (n = 4), use of transition navigators (n = 12), and combination approaches (n = 4). Few studies were designed to directly assess transition and only nine compared outcomes between transition approaches, with substantial heterogeneity in study design, setting and outcomes. Four themes were identified in 25 studies reporting on factors influencing successful transition: fear, knowledge and preparedness, clinic characteristics and the transition requirements and process.
    Conclusions: This review highlights that, despite the need for women to transition into and out of PMTCT services for continued ART in many settings, there is very limited evidence on optimal transition approaches. Ongoing operational research is required to identify sustainable and acceptable transition approaches and service delivery models that support continuity of HIV care during and after pregnancy.
    MeSH term(s) Anti-HIV Agents/therapeutic use ; Antiretroviral Therapy, Highly Active ; Female ; HIV Infections/drug therapy ; HIV Infections/prevention & control ; HIV Infections/transmission ; Humans ; Infectious Disease Transmission, Vertical/prevention & control ; Pregnancy ; Pregnancy Complications, Infectious/drug therapy
    Chemical Substances Anti-HIV Agents
    Language English
    Publishing date 2020-12-29
    Publishing country Switzerland
    Document type Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't ; Research Support, U.S. Gov't, P.H.S. ; Systematic Review
    ZDB-ID 2467110-1
    ISSN 1758-2652 ; 1758-2652
    ISSN (online) 1758-2652
    ISSN 1758-2652
    DOI 10.1002/jia2.25633
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