Considerations of Autonomy in Guiding Decisions around the Feedback of Individual Genetic Research Results from Genomics Research: Expectations of and Preferences from Researchers in Botswana

Kasule, Mary; Matshaba, Mogomotsi; Mwaka, Erisa; Wonkam, Ambroise; Vries, Jantina de

doi:10.1155/2022/3245206

Cited by 8 publications

(5 citation statements)

References 22 publications

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“…The language and the methods used to communicate were considered not fitting for the families. Similar studies done in Africa for genomic research reported similar findings (Kasule et al, 2022). The current practice is to provide results for SCD at the clinic and for the SCT, results are provided through telephone.…”

Section: Discussionsupporting

confidence: 84%

Communicating sickle cell trait results after newborn screening: Approaches and implications to families

Bukini

Msirikale²,

Marco³

et al. 2022

Preprint

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Tanzania is amongst the countries in Africa with one of the highest prevalence of individuals with Sickle Cell Trait. Identifying individuals with SCT is important as they may potentially have children with Sickle Cell Disease. Interventions such as Newborn Screening for SCD can identify individuals carrying the gene very early on to explore strategies for primary prevention. This study aims to document experiences and perspectives of families who have received SCT results for their children through the NBS Program. We were interested to learn their perspectives on the communication approaches used and implications of the results to families. Our overall goal is to evaluate what approaches works best to support comprehension, understanding of genetic testing, concepts of inheritability and general understanding of SCD. We further aim to explore key issues considered by families as most important to inform not only methods, but also most locally relevant content to guide genetic counselling sessions. In total 29 families provided with SCT results participated in six Focus Group Discussions. Families were recruited through NBS program implemented between June to September 2021. Analysis of the data was done through thematic content analysis. Findings were categorized into two main categories (1) Key issues to consider when communicating sickle cell trait results to families. The following themes were identified under this category (1a) Language used to explain the results (1b) Methods used to provide the results (1c) Who was provided with the results (1d) Families comprehension of the results and (1e) What influences families understanding of the results (2) What are the implications of the results to families. The following themes were identified under this category; (2a) How results influenced future reproductive choices (2b) How will the information be kept within families (2c) Age a child will start to be informed about the results (2d) How results influence gender blames within families. Conclusion: Understanding how to ensure genetic results have been properly communicated is core in developing a genetic counselling program. In places where the programs are not well established, there is a need to explore contexts specific approaches to inform ethically relevant communication models that incorporated families and patient perspectives. This study un-packed the different aspects to consider when developing proper communication models and further highlighted issues to explore with families after receiving the results, with the hope that this information will help to inform genetic counselling sessions in places with high SCD burden.

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Section: Discussionsupporting

confidence: 84%

Communicating sickle cell trait results after newborn screening: Approaches and implications to families

Bukini

Msirikale²,

Marco³

et al. 2022

Preprint

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“…Respondents also suggested the need to engage genetic counselors when determining an appropriate communication method of returning these results to communities. Currently, there are few genetic counselors in some sub-Saharan African countries while others do not have any genetic cousellor, yet genomic research in rapidly increasing in Sub-Saharan Africa [65,66]. Genetic counselors are skilled professionals in providing scientific information about genomic and genetics and social support to participants involved in genomic research.…”

Section: Discussionmentioning

confidence: 99%

The role of community engagement in promoting research participants’ understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment

Nabukenya,

Kyaddondo,

Munabi

et al. 2024

PLoS ONE

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Community engagement (CE) is praised to be a powerful vehicle in empowering communities with knowledge and skills to make informed decisions for better health care. Several CE approaches have been proposed to improve participants’ and research communities’ understanding of genomic research including pharmacogenomic information and results. However, there is limited literature on how these approaches can be used to communicate findings of pharmacogenomic research to communities of people living with HIV. This study explored stakeholders’ perspectives on the role of community engagement in promoting understanding of pharmacogenomic research results among people living with HIV. We adopted a qualitative approach that involved 54 stakeholders between September 2021 and February 2022. We held five focus group discussions among 30 community representatives from five research institutions, 12 key informant interviews among researchers, and 12 in-depth interviews among ethics committee members. A thematic approach was used to analyze the results. Five themes merged from this data and these included (i) benefits of engaging communities prior to returning individual pharmacogenomic research results to participants. (ii) Obtaining community consensus on the kinds of pharmacogenomic results to be returned. (iii) Opinions on how pharmacogenomic research information and results should be communicated at community and individual levels. (iv) Perceived roles of community stakeholders in promoting participants’ understanding and utilization of pharmacogenomic research results. (v) Perceived challenges of engaging communities when returning individual results to research participants. Stakeholders opined that CE facilitates co-learning between researchers and research communities. Researchers can adapt existing CE approaches that are culturally acceptable for meaningful engagement with minimal ethical and social risks when communicating pharmacogenomic research results. CE approaches can facilitate understanding of pharmacogenomic research and findings among research participants and communities. Therefore, if creatively adapted, existing and new CE approaches can enable researchers to communicate simple and understandable results of pharmacogenomic research.

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“…Cultural competency in mental health means the ability to engage with communities from different cultural backgrounds efficiently and in an appropriate and relevant manner. A clinician’s understanding of the socio-cultural factors balanced with the relevant medical issues is important to empowering patients to make sense of information shared on genetic aspects of the causes of schizophrenia ( 7 , 17 ).…”

Section: The African Context Of Ethical Principles In Genetic Counsel...mentioning

confidence: 99%

Ethical principles, challenges and opportunities when conducting genetic counselling for schizophrenia

et al. 2023

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Ethical challenges of genetic counselling for schizophrenia include effective communication of critical scientific information in an easily understood manner by patients and relatives, and the ability to ensure communication is unencumbered by medical jargon. Levels of literacy in the target population may limit this process, making it difficult for patients to attain the desired levels of informed consent to make crucial decisions during genetic counselling. Multilingualism in target communities may further complicate such communication. This paper outlines the ethical principles, challenges and opportunities facing clinicians when conducting genetic counselling for schizophrenia and how these might be met, drawing on lessons from South African studies. The paper draws on reflections of clinician and researcher experiences gained from clinical practice or research on the genetics of schizophrenia and psychotic disorders in South Africa. The context of genetic studies in schizophrenia is used to illustrate the ethical challenges in genetic counselling for schizophrenia, both in clinical and research settings. Attention is also drawn to multicultural and multilingual populations, particularly where the preferred language lacks a well-developed scientific language of communication for some of the genetic concepts that have to be presented during the genetic counselling process. The authors describe the ethical challenges and how to address these to empower patients and relatives to make well-informed decisions despite these obstacles. Principles applied by clinicians and researchers during the genetic counselling are described. Potential solutions, including the establishment of community advisory boards to address potential ethical challenges inherent to the genetic counselling process, are also shared. Genetic counselling for schizophrenia still faces ethical challenges which require a balance of principles of beneficence, autonomy, informed consent, confidentiality and distributive justice, while striving to present accuracy in the science that guides the process. Evolution in language and cultural competency therefore needs to occur alongside scientific advances in genetic research. Key stakeholders need to partner and build capacity and expertise in genetic counselling through the provision of funding and resources. The goal of partnerships is to empower patients, relatives, clinicians and researchers to share scientific information in a manner guided by empathy while retaining scientific accuracy.

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Considerations of Autonomy in Guiding Decisions around the Feedback of Individual Genetic Research Results from Genomics Research: Expectations of and Preferences from Researchers in Botswana

Cited by 8 publications

References 22 publications

Communicating sickle cell trait results after newborn screening: Approaches and implications to families

Communicating sickle cell trait results after newborn screening: Approaches and implications to families

The role of community engagement in promoting research participants’ understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment

Ethical principles, challenges and opportunities when conducting genetic counselling for schizophrenia

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