scholarly journals Parental Autonomy and the Obligation Not to Harm One's Child Genetically

1997 ◽  
Vol 25 (1) ◽  
pp. 5-15 ◽  
Author(s):  
Ronald M. Green

Until recently, genetics counselors and medical geneticists considered themselves lucky if they could provide parents with predictive information about a small number of severe genetic disorders. Testing and counseling were indicated primarily for conditions of thithis s sort. Out of respect for the autonomy of parental reproductive decision making, the prevailing ethic of genetic counseling stressed nondirectiveness and value neutrality As summarized by Arthur Caplan, the hallmarks of this stance includea willingness to provide testing and counseling to all who voluntarily seek it, the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, the fair and balanced presentation of all options for action if a problem is discovered, a willingness to answer all questions asked by those seeking services, and an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits.

2021 ◽  
Vol 18 (1) ◽  
Author(s):  
Ariadna Huertas-Zurriaga ◽  
Patrick A. Palmieri ◽  
Joan E. Edwards ◽  
Sandra K. Cesario ◽  
Sergio Alonso-Fernandez ◽  
...  

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.


Epilepsia ◽  
2021 ◽  
Author(s):  
Jacquelyn Nakamura ◽  
Shawn T. Sorge ◽  
Melodie R. Winawer ◽  
Jo C. Phelan ◽  
Wendy K. Chung ◽  
...  

2018 ◽  
Vol 29 (9) ◽  
pp. 908-916 ◽  
Author(s):  
Deborah L Jones ◽  
Violeta J Rodriguez ◽  
Suat Babayigit ◽  
Antonio Chahine ◽  
Stephen M Weiss ◽  
...  

Despite pregnancy spacing recommendations to optimize health outcomes among mothers and neonates, unplanned pregnancy in sub-Saharan Africa is common among women living with human immunodeficiency virus (HIV) (WLHIV). This study examined factors associated with reproductive decision-making among WLHIV to inform pregnancy-planning interventions. WLHIV in rural South Africa (n = 165) were assessed at 12 months postpartum. The relative importance of factors associated with reproductive decision-making was estimated. Women were a mean of 28 years old (SD = 5.71). Risk of mother-to-child transmission (MTCT) of HIV (Mean = 0.43; SD = 0.33) had the greatest impact on decision-making, followed by partners’ desires (M = 0.22; SD = 0.18), family preferences (M = 0.18; SD = 0.13), and community opinion (M = 0.17; SD = 0.13). MTCT was most important to women with greater HIV knowledge. However, WLHIV who had been diagnosed with HIV for a longer time placed more emphasis on partner preference and community opinion, and less importance on MTCT risk. Prevention of mother-to-child transmission (PMTCT) was less important to women experiencing intimate partner violence and those with depression. Findings highlight the need for tailored, focused interventions to support the unique circumstances of WLHIV and support the inclusion of families and/or partners in the counseling process. Results underscore the need for perinatal preconception counseling for women during routine HIV care.


Author(s):  
Eva Feder Kittay

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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