Imagining Life with a Genetic Disorder: The Challenge of Evaluating Health States that Exist from Birth
OBM Genetics is an international Open Access journal published quarterly online by LIDSEN Publishing Inc. It accepts papers addressing basic and medical aspects of genetics and epigenetics and also ethical, legal and social issues. Coverage includes clinical, developmental, diagnostic, evolutionary, genomic, mitochondrial, molecular, oncological, population and reproductive aspects. It publishes research articles, reviews, communications and technical notes, etc. There is no restriction on the length of the papers and we encourage scientists to publish their results in as much detail as possible.
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Rapid publication: manuscripts are undertaken in 8.5 days from acceptance to publication (median values for papers published in this journal in the first half of 2019, 1-2 days of FREE language polishing time is also included in this period).
Policy Issues in Prenatal and Neonatal Testing, Counseling, and Decision-Making
Submission Deadline: July 31, 2021 (Open) Submit Now
Diane B. Paul, PhD, Professor Emerita
University of Massachusetts Boston, Boston, United States
Research Interests: newborn screening; phenylketonuria (PKU); prenatal testing and counseling; history of eugenics
Ilana Löwy, PhD, Senior Researcher Emerita
1. INSERM, France
2. French National Centre for Scientific Research, France
Research Interests: prenatal testing; material cultures of medicine; cancer risk and screening; biomedicine and gender; biomedicine in Brazil
About This Topic
Many aspects of prenatal and neonatal testing, counseling, and decision-making raise complex policy issues that are often fiercely contested and emotionally-charged. Should newborn screening expand to include all inheritable disorders detectable at birth or should it be restricted to those disorders where presymptomatic treatment is likely to significantly reduce mortality and morbidity? And which groups should be considered legitimate stakeholders in this debate? In the prenatal domain, the advent of non-invasive prenatal testing (NIPT) has converged with the increasing stigmatization of abortion and the mobilisation of disability-rights groups to provoke new political, social, and cultural challenges to the practice of pregnancy termination for fetal anomaly and also raised questions about what prospective parents should be told and by whom about the quality of life with inherited/congenital conditions. Who should counsel women and their partners after a positive prenatal diagnosis, and what kinds of information and advice should they provide? Preimplantation genetic diagnosis (PGD) avoids the issue of pregnancy termination but raises other issues related to selection for sex and against disability and the need to acquire and dispose of embryos. These are just a few of the fraught questions with which health-care providers, advocacy groups, and policy-makers are currently grappling.
For this special issue of OBM Genetics, we invite colleagues concerned with policy issues in either domain to submit original research articles, reviews, or opinion pieces. We especially welcome contributions from practitioners able to draw on their on-the-ground experiences.
Neonatal testing; prenatal testing (PND); preimplantation genetic diagnosis (PGD); selective abortion; Non-invasive prenatal testing (NIPT); advocacy organisations; genetic counseling; disability-rights
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