Article
Genetics & Heredity
Miranda E. Vidgen, Katrina Cutler, Jessica Bean, David Bunker, Lindsay F. Fowles, Louise Healy, Gary Hondow, Satrio Nindyo Istiko, Aideen M. McInerney-Leo, Gregory Pratt, Deborah Robins, Nicola Waddell, Erin Evans
Summary: Consumer and community engagement is crucial for the implementation of genomics into health services and research. The Queensland Genomics program successfully utilized a Community Advisory Group (CAG) to provide advice and leadership in community-focused activities. However, limitations were faced due to a lack of mechanisms for implementing consumer and community engagement in the program's projects.
FRONTIERS IN GENETICS
(2022)
Article
Biochemistry & Molecular Biology
Rosa Alcazar, Maria Alvarez, Rachel Arnold, Mentewab Ayalew, Lyle G. Best, Michael C. Campbell, Kamal Chowdhury, Katherine E. L. Cox, Christina Daulton, Youping Deng, Carla Easter, Karla Fuller, Shazia Tabassum Hakim, Ava M. Hoffman, Natalie Kucher, Andrew Lee, Joslynn Lee, Jeffrey T. Leek, Robert Meller, Loyda B. Mendez, Miguel P. Mendez-Gonzalez, Stephen Mosher, Michele Nishiguchi, Siddharth Pratap, Tiffany Rolle, Sourav Roy, Rachel Saidi, Michael C. Schatz, Shurjo K. Sen, James Sniezek, Edu Suarez Martinez, Frederick J. Tan, Jennifer Vessio, Karriem Watson, Wendy Westbroek, Joseph Wilcox, Carrie Wright, Xianfa Xie
Summary: In the past 20 years, the advancement in genomic data collection and cloud computing has made computational and data science research accessible to anyone with internet access. However, students at institutions with limited resources lack exposure and opportunities in genomic data science. To address this, the Genomic Data Science Community Network has been formed to support students and faculty at underserved institutions in identifying and accessing opportunities in genomic data science.
Review
Plant Sciences
Jakob Petereit, Jacob Marsh, Philipp E. Bayer, Monica F. Danilevicz, William J. W. Thomas, Jacqueline Batley, David Edwards
Summary: Soybean, a legume of economic and nutritional value, has seen increasing yields due to the breeding of improved varieties and the application of genetic and genomic approaches. With advancements in genome technologies, studying variations between individuals and populations has become more accessible. The development of soybean pangenomes has revealed significant structural variations between individuals and provided valuable information for breeding improved cultivars.
Article
Public, Environmental & Occupational Health
Zinhle Mthembu, Moses Chimbari
Summary: The study assessed the community's knowledge and participation in two research projects conducted in the Ingwavuma community in rural South Africa between 2014 and 2021. The community was generally well-informed about the projects, but direct participation was limited. The researchers provided education and authorization in the community engagement process, but there is room for improvement in terms of consultation and empowerment.
FRONTIERS IN PUBLIC HEALTH
(2023)
Review
Pathology
Alessandro Pietro Aldera, Komala Pillay, Barbara Robertson, Adam Boutall, Rajkumar Ramesar
Summary: Our understanding of the molecular classification of colorectal carcinoma has significantly evolved in the past two decades. However, most of the data on which this classification is based come from Europe and North America, with limited representation from Africa. Preliminary studies have shown significant differences in molecular characteristics between African and other populations, suggesting the need for further research.
JOURNAL OF CLINICAL PATHOLOGY
(2023)
Article
Biochemistry & Molecular Biology
Amanda M. Willis, Bronwyn Terrill, Angela Pearce, Alison McEwen, Mandy L. Ballinger, Mary-Anne Young
Summary: Researchers and research participants increasingly support returning clinically actionable genetic research findings to participants, leading to the development of the My Research Results program. This initiative, led by genetic counsellors, offers genetic counselling services, support for researchers in ethical strategy development, and an online information platform for accessing research findings.
EUROPEAN JOURNAL OF HUMAN GENETICS
(2022)
Article
Multidisciplinary Sciences
Joseph Ochieng, Betty Kwagala, John Barugahare, Erisa Mwaka, Deborah Ekusai-Sebatta, Joseph Ali, Nelson K. Sewankambo
Summary: This study explores researchers' perspectives and experiences regarding feedback of incidental genomics findings to participants in genetics and genomics research. The study finds that researchers generally find it acceptable to share incidental research findings with participants, but face challenges such as lack of ethical guidelines and uncertainty about the findings.
Editorial Material
Medicine, Research & Experimental
Dawood Darbar
Summary: This study conducted the largest GWAS of European individuals with CHD to date, identifying common genetic variants associated with cardiac anomalies. Through single-cell analysis, the researchers revealed the roles of specific genes in heart development, advancing our understanding of the genetic basis of common forms of CHD.
JOURNAL OF CLINICAL INVESTIGATION
(2021)
Article
Genetics & Heredity
Frank Angelo, David Veenstra, Sarah Knerr, Beth Devine
Summary: Medical distrust is a persistent barrier to medical care, affecting preventative screening, treatment uptake, and treatment adherence. This study assesses the prevalence of medical distrust in a genomic medicine research sample and identifies demographic, access-related, and health-status characteristics that predict medical distrust. The results show that the prevalence of medical distrust is 32%. Predictors of medical distrust include race/ethnicity, gender identity, education level, income level, access to healthcare, and mental health composite scores.
GENETICS IN MEDICINE
(2022)
Editorial Material
Multidisciplinary Sciences
Ludovic Orlando
Summary: An extensive genomic time series has been conducted on 356 humans from ice-age Europe, showing the impact of climate change on the migration patterns and cultural development of hunter-gatherer populations.
Article
Health Care Sciences & Services
Tanvir C. Turin, Mashrur Kazi, Nahid Rumana, Mohammad A. A. Lasker, Nashit Chowdhury
Summary: Meaningful community engagement involves addressing community needs, enhancing community capacity, and using culturally tailored strategies. Currently, community engagement in health and wellness research typically begins and ends with a specific research project, limiting the transfer of outcomes to future projects. This article proposes a philosophical approach that views community engagement as an infinite game, emphasizing long-term research programs and the community's active involvement.
HEALTH EXPECTATIONS
(2023)
Editorial Material
Multidisciplinary Sciences
Aswin Sekar, Benjamin L. Ebert
Summary: Two studies on mutations in blood-forming cells shed light on the dynamics of blood production in humans and its correlation with aging.
Editorial Material
Microbiology
Mark R. Sullivan, Eric J. Rubin, Charles L. Dulberger
Summary: Mycobacterium abscessus (Mab) is highly tolerant to current antibiotic therapies, leading to a high failure rate of standard care. Phages may offer a promising alternative treatment with few side effects. Two studies shed light on the natural phage complement of Mab and the factors that may drive susceptibility to these phages, paving the way for more effective phage therapy development.
Review
Public, Environmental & Occupational Health
Samantha Vanderslott, Manya Van Ryneveld, Mark Marchant, Shelley Lees, Sylvie Kwedi Nolna, Vicki Marsh
Summary: Community engagement (CE) is recognized as a core field in health research, and its effectiveness in infectious disease outbreak contexts is increasingly being emphasized. This scoping review identifies three key themes for effective CE: communication for building collaborative relationships, producing contextual knowledge, and learning lessons over time.
Article
Green & Sustainable Science & Technology
Idiano D'Adamo, Claudio Sassanelli
Summary: The bioeconomy is an effective solution to address the sustainability agenda and global calls for action. This study focuses on biomethane and proposes a framework to evaluate its implementation based on several criteria. Results show that regulation and energy community are the most relevant factors, with stakeholder engagement being the most important. The case study of the Italian Adriatic corridor reveals the potential environmental and economic benefits of biomethane production.
Article
Public, Environmental & Occupational Health
Sarah Bernays, Chloe Lanyon, Edward Tumwesige, Allen Aswiime, Nothando Ngwenya, Vuyiswa Dlamini, Maryam Shahmanesh, Janet Seeley
Summary: Young migrants in sub-Saharan Africa are vulnerable to HIV-acquisition, but they often do not have adequate access to services. To address this issue, a community-based participatory research approach was used to identify the specific support needs of young migrants and co-design an intervention suitable for their local contexts. The intervention focused on fostering protective factors and resilience through peer supporter networks, a drop-in resource center, and local adult champions. This practical example provides insights into how researchers can facilitate the development of acceptable and sustainable interventions.
GLOBAL PUBLIC HEALTH
(2023)
Article
Health Policy & Services
Faith Martin, Eleanor Clowes, Winifred Nalukenge, Cain Clark, Oucul Lazarus, Josephine Birungi, Janet Seeley
Summary: There is an urgent need for greater provision of mental health services to HIV-positive individuals. Current HIV testing and counselling (HTC) sessions primarily focus on basic counselling skills, lacking specific techniques for assessment and therapy for anxiety and depression. However, HTC staff have the potential to train and supervise other staff to provide mental health support. Future research should develop brief mental health interventions for HTC staff to deliver.
AIDS CARE-PSYCHOLOGICAL AND SOCIO-MEDICAL ASPECTS OF AIDS/HIV
(2023)
Article
Immunology
Gambo G. Aliyu, Jonathan G. Lawton, Andrew B. Mitchell, Alash'le G. Abimiku, Tapdiyel Jelpe, Orji Bassey, David J. Riedel, Mahesh Swaminathan, Joy Chih-Wei Chang, Joshua R. DeVos, Hetal Patel, Man E. Charurat, Kristen A. Stafford
Summary: This study used data from the Nigeria HIV/AIDS Indicator and Impact Survey (NAIIS) to describe the prevalence and distribution of HIV drug resistance (HIVDR) in Nigeria. The study found that drug-resistant mutations that confer resistance to antiretroviral drugs, particularly NNRTIs and NRTIs, are relatively common in the Nigerian population. This study is important for informing clinical decisions and developing population-level HIV policy strategies.
Article
Infectious Diseases
Ivan Kasamba, Joseph Mugisha, Andrew Abaasa, Ronald Makanga, Eugene Ruzagira, Pontiano Kaleebu, Janet Seeley, Robert Newton
Summary: This study documented the changes in HIV incidence over 30 years in Kalungu district, Uganda. The results showed a downward trend in age-adjusted HIV incidence, despite an increase in HIV prevalence. The study emphasizes the importance of HIV testing, timely initiation of antiretroviral therapy, and support for treatment adherence.
INTERNATIONAL JOURNAL OF INFECTIOUS DISEASES
(2023)
Article
Otorhinolaryngology
Christine Graham, Ayanda Gina, Janet Seeley, Yougan Saman
Summary: This study developed and tested a Knowledge, Attitudes and Practice (KAP) survey tool on childhood hearing loss and newborn hearing screening. The results showed that the tool had good validity and test-retest repeatability. This study provides important evidence for promoting the implementation of a Universal Newborn Hearing Screening (UNHS) program.
INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY
(2023)
Article
Health Policy & Services
Andrew Gibbs, Chris Desmond, Tony Barnett, Maryam Shahmanesh, Janet Seeley
Summary: This study aimed to assess the impact of hope on HIV-risk behaviors among young, out-of-school men and women living in urban informal settlements in Durban, South Africa. The results showed that high levels of hope were associated with increased modern contraceptive use among women, while medium or high levels of hope were associated with reduced physical and/or sexual intimate partner violence perpetration, emotional intimate partner violence perpetration, and transactional sex among men.
AIDS CARE-PSYCHOLOGICAL AND SOCIO-MEDICAL ASPECTS OF AIDS/HIV
(2023)
Article
Family Studies
Emily Nyariki, Rhoda Wanjiru, Pooja Shah, Mary Kungu, Hellen Babu, Helen A. Weiss, Janet Seeley, Joshua Kimani, Tara S. Beattie
Summary: Women who sell sex face challenges in raising their children due to socio-economic difficulties and the stigma associated with their work. This paper presents findings from a qualitative study conducted in Nairobi, Kenya, which explored the experiences of female sex workers who are also mothers. Interviews with 39 women revealed themes related to their entry into sex work, childcare arrangements, maintaining respectability for their children, and prioritizing safety and security. Results indicate that poverty and lack of reliable income sources drove women to engage in sex work, but they demonstrated agency in balancing their stigmatized work with their roles as mothers.
CULTURE HEALTH & SEXUALITY
(2023)
Editorial Material
Ethics
Heidi Matisonn, Jantina de Vries, Jackie Hoare
AMERICAN JOURNAL OF BIOETHICS
(2023)
Article
Ethics
Mary Kasule, Mogomotsi Matshaba, Ambroise Wonkam, Jantina de Vries
Summary: Through in-depth interviews with 16 stakeholders in Botswana, this study explored the opportunities and challenges of returning individual genomic research results, addressing issues such as validation, cost, linkage to care, and lack of experts.
BMC MEDICAL ETHICS
(2023)
Article
Public, Environmental & Occupational Health
Phiona Nalubega, Ritah Namugumya, Flavia Zalwango, Agnes Ssali, Robert Mboizi, Lauren Hookham, Janet Seeley, Kirsty Le Doare
Summary: This study investigated the knowledge, perceptions, and experiences of pregnant women and community leaders regarding the COVID-19 vaccination program in Uganda, as well as how these changed during the pandemic. The findings revealed that pregnant women had concerns about the safety and quality of the vaccine but recognized its benefits. Targeted and sustained communication and engagement strategies are needed to improve vaccine confidence among pregnant women and their communities during outbreaks.
TRANSACTIONS OF THE ROYAL SOCIETY OF TROPICAL MEDICINE AND HYGIENE
(2023)
Review
Medicine, Research & Experimental
David S. S. Lawrence, Agnes Ssali, Joseph N. N. Jarvis, Janet Seeley
Summary: Background research on life-threatening illnesses requiring emergency hospitalisation is vital. This study aimed to synthesise qualitative data from trial participants and surrogate decision-makers to enhance our understanding and inform future clinical trials for such illnesses. The findings highlighted the need for tailored research processes and informed consent for individuals with life-threatening illnesses.
Article
Psychology, Clinical
Nothando Ngwenya, Thandeka Smith, Maryam Shahmanesh, Christina Psaros, Chiedza Munikwa, Khethokuhle Nkosi, Janet Seeley
Summary: This study examined the experiences of adolescents living with HIV in different communities in relation to isolation due to their diagnosis and consequences of disclosure, using the analytic framework of structuration theory. The findings revealed that adolescents' choices regarding disclosure of their HIV status are influenced by their community experiences, as they often face discrimination and negative judgements. Stigma, discrimination, and psychological distress contribute to the social isolation and loneliness experienced by adolescents and young adults living with HIV. Limited disclosure itself can lead to isolation and loneliness.
INTERNATIONAL JOURNAL OF BEHAVIORAL MEDICINE
(2023)
Editorial Material
Public, Environmental & Occupational Health
Natsayi Chimbindi, Thembelihle Zuma, Andrew Gibbs, Sarah Bernays, Janet Seeley
FRONTIERS IN REPRODUCTIVE HEALTH
(2023)
Article
Public, Environmental & Occupational Health
Hanlie Myburgh, Graeme Hoddinott, Janet Seeley, Virginia Bond, Peter Bock, Richard Hayes, Ria Reis, Lindsey Reynolds
Summary: This study explores how community members in South Africa make decisions around taking up home-based HIV testing and how the goal of achieving HIV epidemic control is internalized and enacted in the interactions between community members and health workers. The findings suggest that a community-wide health intervention can motivate individuals to be good, moral citizens in contexts of low social cohesion.
SSM-QUALITATIVE RESEARCH IN HEALTH
(2023)
Article
Public, Environmental & Occupational Health
Urisha Singh, Stephen Olivier, Diego Cuadros, Alison Castle, Yumna Moosa, Thando Zulu, Jonathan Alex Edwards, Hae-Young Kim, Resign Gunda, Olivier Koole, Ashmika Surujdeen, Dickman Gareta, Day Munatsi, Tshwaraganang H. Modise, Jaco Dreyer, Siyabonga Nxumalo, Theresa K. Smit, Greg Ordering-Jespersen, Innocentia B. Mpofana, Khadija Khan, Zinzile E. L. Sikhosana, Sashen Moodley, Yen-Ju Shen, Thandeka Khoza, Ngcebo Mhlongo, Sanah Bucibo, Kennedy Nyamande, Kathy J. Baisley, Alison D Grant, Kobus Herbst, Janet Seeley, Deenan Pillay, Willem Hanekom, Thumbi Ndung'u, Mark J. Siedner, Frank Tanser, Emily B. Wong
Summary: This study assessed the multimorbidity health needs of individuals and communities in rural KwaZulu-Natal, South Africa, and found a high burden of unmet health needs for patients with hypertension and diabetes. Therefore, integrating the care for communicable and non-communicable diseases is of high priority in South Africa.
LANCET GLOBAL HEALTH
(2023)
