Reproduction and Genetic Responsibility: An Interpretive Description of Reproductive Decision-Making for Young People With Li-Fraumeni Syndrome

The reproductive decision-making of young people (aged 15–39 years) with Li-Fraumeni syndrome (LFS), an early onset inherited cancer syndrome, has not been studied in depth. Using interpretive description methodology, we conducted semi-structured interviews with 30 young Australians (mean age 25.5 years) diagnosed with LFS or at 50% genetic risk. With reflexive thematic analysis, we show how young people’s reproductive decision-making and ideals for family formation were shaped by a sense of genetic responsibility to ensure the health of future biological kin. Reproductive technology provided choices for family formation in the context of LFS and also complicated reproductive decisions, as these choices were difficult to understand, make, or carry out. We uphold that reproductive decision-making when living with LFS is a profoundly moral practice that may pose significant challenges for young people navigating their formative years. We offer genetic counseling practice recommendations to support individuals with LFS when making reproductive decisions.

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The Limits of Choice

Learning from My Daughter ◽

10.1093/oso/9780190844608.003.0004 ◽

2019 ◽

pp. 63-76

Author(s):

Eva Feder Kittay

Keyword(s):

Decision Making ◽

Reproductive Decisions ◽

Reproductive Choices ◽

Reproductive Decision ◽

Reproductive Decision Making ◽

The Face ◽

Unexpected Outcomes

Inquiring into the relation between reproductive decision-making and the unexpected, this chapter claims that reproductive choices around disability bring out inherent paradoxes of choice in the face of uncertainty. Arguing that reproductive decisions around disability, like all reproductive decisions, must be left to the person carrying the child, this chapter also insists that reproductive choices attend to the role of chance and unexpected outcomes.

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Revisiting Minors’ Reproductive Autonomy Rights under South African Law: The Rights and Wrongs of the Choice on Termination of Pregnancy Act

Southern African Public Law ◽

10.25159/2522-6800/2953 ◽

2018 ◽

Vol 33 (1) ◽

Author(s):

Admark Moyo

Keyword(s):

Decision Making ◽

South African ◽

State Intervention ◽

Termination Of Pregnancy ◽

Reproductive Decisions ◽

Reproductive Autonomy ◽

Parental Responsibility ◽

Reproductive Decision ◽

Reproductive Decision Making ◽

The Right

This article examines the interface between children’s autonomy, parental responsibility and state intervention in reproductive decisions of a particular type, namely the termination of pregnancy. Children asserting their autonomy in reproductive decision-making often confront counterclaims of legitimate intervention by parents or guardians responsible for caring for the child. Locating the right balance between competing interests is very important because uninformed decisions, with or without the support of parents, often carry heavy consequences for the education, health and life of the pregnant child. More specifically, this article seeks to investigate the extent to which South African law protects and empowers sexually active adolescents to make decisions concerning the termination of pregnancy. This involves an analysis of the degree to which relevant legislation appropriately reconciles children’s reproductive autonomy rights–—particularly the right to terminate a pregnancy without parental consent or approval–—with parental responsibility and state intervention. Parental responsibility and state intervention embody children’s right to and need for protection (from the immaturity that characterises youth) when decisions to terminate pregnancies are made. Accordingly, this article focuses on whether or not the Choice on Termination of Pregnancy Act strikes an appropriate balance between children’s autonomy, parental responsibility and state intervention in reproductive decision-making.

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The First Amendment and Physician Speech in Reproductive Decision Making

The Journal of Law Medicine & Ethics ◽

10.1111/jlme.12193 ◽

2015 ◽

Vol 43 (1) ◽

pp. 22-34 ◽

Cited By ~ 2

Author(s):

Sonia M. Suter

Keyword(s):

Decision Making ◽

Informed Consent ◽

First Amendment ◽

State Legislatures ◽

Reproductive Decisions ◽

Planned Parenthood ◽

Police Powers ◽

Reproductive Decision ◽

Reproductive Decision Making ◽

The Supreme Court

The regulation of medicine has long been recognized as within the state’s police powers. Yet when the state regulates physicians’ professional speech, it potentially raises First Amendment concerns. Nowhere is this truer than in the abortion context, where state legislatures have attempted to influence women’s reproductive decisions with informed consent requirements. Although the Supreme Court, in Planned Parenthood of Se. Pa. v. Casey, found a mandated disclosure provision constitutional some 20 years ago, it offered little to clarify the scope and reach of the First Amendment issues that arise with abortion informed consent laws.Since Casey was decided, legislatures have enacted a range of informed consent laws that impose even more stringent abortion informed consent regulations than the provisions at issue in Casey.

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Bipolar Disorder, Genetic Risk, and Reproductive Decision-Making: A Qualitative Study of Social Media Discussion Boards

Qualitative Health Research ◽

10.1177/1049732319867670 ◽

2019 ◽

Vol 30 (2) ◽

pp. 293-302

Author(s):

Puneet K.C. Sahota ◽

Pamela L. Sankar

Keyword(s):

Decision Making ◽

Bipolar Disorder ◽

Genetic Risk ◽

Reproductive Decisions ◽

Discussion Boards ◽

Reproductive Decision ◽

Sensitive Topics ◽

Reproductive Decision Making ◽

Internet Discussion ◽

Source Of Information

In this study, we present views on bipolar disorder and reproductive decision-making through an analysis of posts on Reddit™, a major Internet discussion forum. Prior research has shown that the Internet is a useful source of data on sensitive topics. This study used qualitative textual analysis to analyze posts on Reddit™ bipolar discussion boards that dealt with genetics and related topics. All thread titles over 4 years were reviewed ( N = 1,800). Genetic risk was often raised in the context of Redditors’ discussions about whether or not to have children. Reproductive decision-making for Redditors with bipolar was complex and influenced by factors from their past, present, and imagined future. These factors coalesced under a summative theme: for adults with bipolar disorder, what was the manageability of parenting a child? Reproductive decisions for individuals with bipolar disorder are complex, and Reddit™ is a novel source of information on their perspectives.

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Correlation between Social Determinants of Health and Women’s Empowerment in Reproductive Decision-Making among Iranian Women

Global Journal of Health Science ◽

10.5539/gjhs.v8n9p312 ◽

2016 ◽

Vol 8 (9) ◽

pp. 312 ◽

Cited By ~ 2

Author(s):

Zahra Kiani ◽

Masuomeh Simbar ◽

Mahrokh Dolatian ◽

Farid Zayeri

Keyword(s):

Decision Making ◽

Social Determinants Of Health ◽

Social Determinants ◽

Women's Empowerment ◽

Self Esteem ◽

Determinants Of Health ◽

Women’S Empowerment ◽

Reproductive Decisions ◽

Reproductive Decision ◽

Reproductive Decision Making

BACKGROUND & OBJECTIVES: Women empowerment is one of millennium development goals which is effective on fertility, population’s stability and wellbeing. The influence of social determinants of health (SDH) on women empowerment is documented, however the correlation between SDH and women’s empowerment in fertility has not been figured out yet. This study was conducted to assess correlation between social determinants of health and women’s empowerment in reproductive decisions.MATERIAL & METHODS: This was a descriptive-correlation study on 400 women who attended health centers affiliated to Shahid Beheshti University of Medical Sciences Tehran-Iran. Four hundred women were recruited using multistage cluster sampling method. The tools for data collection were 6 questionnaires including; 1) socio-demographic characteristics 2) women's empowerment in reproductive decision-making, 3) perceived social support, 4) self-esteem, 5) marital satisfaction, 6) access to health services. Data were analyzed by SPSS-17 and using Pearson and Spearman correlation tests.RESULTS: Results showed 82.54 ± 14.00 (Mean±SD) of total score 152 of women’s empowerment in reproductive decision making. All structural and intermediate variables were correlated with women’s empowerment in reproductive decisions. The highest correlations were demonstrated between education (among structural determinants; r= 0.44, P< 0.001), and Self-esteem (among intermediate determinants; r= 0.34, P< 0.001) with women’s empowerment in fertility decision making.CONCLUSION: Social determinants of health have a significant correlation with women's empowerment in reproductive decision-making.

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Researching relationality: Reflections on the use of concept cards during in-depth interviews

Methodological Innovations ◽

10.1177/20597991211035525 ◽

2021 ◽

Vol 14 (2) ◽

pp. 205979912110355

Author(s):

Kristina Saunders

Keyword(s):

Decision Making ◽

Knowledge Production ◽

Methodological Approach ◽

Reproductive Decisions ◽

Reproductive Decision ◽

Political World ◽

Reproductive Decision Making ◽

The Social ◽

The Individual ◽

Depth Interviews

This article reflects on the use of concept cards during in-depth interviews when researching reproductive decision-making in the context of neoliberalism and postfeminism. As existing literature has shown, card methods are valuable in centring participants’ individual experiences through increased control and inclusion during data collection, and attention has been drawn to their use as an ethically attentive method that can elicit richer, more complex narratives than interviews alone. While these strengths initially led me to consider the cards as an appropriate ‘fit’ with my feminist methodological approach, on reflection, the cards also illuminated the relationality of experiences that my research was concerned with. I view this as occurring in two ways. First, participants’ use of the cards helped to uncover the intertwining of their reproductive decisions with the social and political world, therefore complicating the neoliberal prioritization of the individual. Second, the cards brought the relation between myself and the participants, and between the participants, to the forefront. The reflections in this article therefore offer new insights into what concept cards can achieve, as not only validating individual accounts, but as enhancing the relationality of knowledge production.

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Reproductive decision-making in women with multiple sclerosis in the New York State Multiple Sclerosis Consortium

10.26226/morressier.5b7578665aff7400151f30ec ◽

2018 ◽

Author(s):

Caila B. Vaughn

Keyword(s):

Multiple Sclerosis ◽

Decision Making ◽

New York ◽

New York State ◽

York State ◽

Reproductive Decision ◽

Reproductive Decision Making

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Motherhood and decision-making among women living with HIV in developed countries: a systematic review with qualitative research synthesis

Reproductive Health ◽

10.1186/s12978-021-01197-6 ◽

2021 ◽

Vol 18 (1) ◽

Author(s):

Ariadna Huertas-Zurriaga ◽

Patrick A. Palmieri ◽

Joan E. Edwards ◽

Sandra K. Cesario ◽

Sergio Alonso-Fernandez ◽

...

Keyword(s):

Systematic Review ◽

Decision Making ◽

Qualitative Research ◽

Research Synthesis ◽

Developed Countries ◽

Evidence Based ◽

Reproductive Decision ◽

Women Living With Hiv ◽

Reproductive Decision Making ◽

Living With Hiv

Abstract Background Women living with HIV (WLH) lack evidence-based information about reproductive options while managing pressures from family, clinicians, and communities to give up the idea of having children. As the reproduction intentions of WLH are not well understood, stigmatizing behaviors force them to hide their disease to avoid rejection by their family, partner, and social networks. Compliance with social norms, fear of stigma, and discrimination influence their experience. Current research is individual qualitative studies lacking the synthesis perspective necessary to guide intervention development. The purpose of this study was to synthesize the evidence to explain the reproductive decision-making process for WLH in developed countries. Methods A systematic review with qualitative research synthesis was conducted through searches in 10 electronic databases (CINAHL, EMBASE, MEDLINE, Scopus, Social Science Citation Index, Web of Science, Google Scholar, Cuidatge, Cuiden Enfispo, and SciELO). Studies published in journals from 1995 to 2019 with qualitative data about reproductive decision-making among WLH in developed countries were eligible for inclusion. Developed country was operationalized by membership in the OECD for comparative conditions of social wellbeing and economic stability. The CASP and JBI checklists for qualitative research were used to assess study quality and methodological integrity. Thematic analysis and qualitative meta-summary techniques were used for the synthesis. Results Twenty studies from 12 developed countries were included in the synthesis. Findings were organized into 3 meta-themes from 15 themes and 45 subthemes, including: (1) Shattered identity, (2) Barriers, inequities, and misinformation, (3) Coping, resiliency, and support. Reproductive decision-making was perceived as a complex process influenced by facilitators and barriers. The facilitators helped WLH cope with their new situation to become more resilient, while the barriers made their situation more difficult to manage. Conclusion WLH encounter reproductive decision-making with knowledge deficits and limited social support. An integrated approach to holistic care with comprehensive multidisciplinary counseling is needed to support WLH. Clinicians could benefit from professional development to learn how to be authentically present for WLH, including engaging in conversations, demonstrating compassion, and understanding situations. Evidence-based clinical practice guidelines need to be tailored for the family planning and sexual health needs of WLH.

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