Research and Resource Articles

Click on a topic below to view research and other resource articles

Abortion

Aborting the Wanted Child (2020)

Is Abortion Justified After an Adverse Prenatal Diagnosis? (2018)

Abortion’s Impact on Prematurity: Closing the Knowledge Gap (2017)

Psychological Impact of Abortion due to Fetal Anomaly: A Review of Published Research (2017)

Prenatal Testing and Abortion: The Impact on Parents and Families (2016)

Health care professionals’ attitudes about pregnancy termination for different fetal anomalies (2012)

Prenatal diagnosis of hypoplastic left heart syndrome: impact of counseling patterns on parental perceptions and decisions regarding termination of pregnancy (2012)

Adjustment to termination of pregnancy for fetal anomaly: a longitudinal study in women at 4, 8, and 16 months (2009)

Psychological impact on women after second and third trimester termination of pregnancy due to fetal anomalies versus women after preterm birth–a 14-month follow up study (2009)

Grief After Termination of Pregnancy Due to Fetal Malformation (2004)

 

Anencephaly

Prolonged unassisted survival in an infant with anencephaly (2016)

Fatally flawed? A review and ethical analysis of lethal congenital malformations (2012)

Carrying to Term

“I Would Do It All Over Again”: Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis (2018)

Acknowledged Dependence and the Virtues of Perinatal Hospice – PMC (nih.gov) (2016)

Have no regrets: Parents’ Experiences and Developmental Tasks in Pregnancy with a Lethal Fetal Diagnosis (2016)

Pregnancy continuation and organizational religious activity following prenatal diagnosis of a lethal fetal defect are associated with improved psychological outcome (2015)

Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition (2006)

Catholic Ethics

Newborn Care and “Lethal” Prenatal Diagnoses (2020)

Ethical Care of Infants with a Life-Limiting Prenatal Diagnoses Based on Catholic Teaching (2019)

Prenatal Testing and Denial of Care (2018)

Congenital Heart Disease (CHD)

Opportunities to Enhance Parental Well-Being During Prenatal Counseling for Congenital Heart Disease (2022) 

Potential benefits and consequences of public reporting of pediatric cardiac surgery outcomes (2016)

Maternal Psychological Stress after Prenatal Diagnosis of Congenital Heart Disease (2012)

Prenatal Diagnosis of Hypoplastic Left Heart Syndrome: Impact of Counseling Patterns on Parental Perceptions and Decisions Regarding Termination of Pregnancy (2012)

Down Syndrome (Trisomy 21)

The Impact of Implicit and Explicit Bias About Disabilities on Parent Experiences and Information Provided During Prenatal Screening and Testing (2023)

Prenatal Risk Assessment and Diagnosis of Down Syndrome: Strategies for Communicating Well with Patients (2016)

The Portrayal of Down Syndrome in Prenatal Screening Information Pamphlets (2012)

Edward’s Syndrome (Trisomy 18)

Obstetricians’ Views on the Ethics of Cardiac Surgery for Newborns with Common Aneuploidies (2018)

Mortality and Resource Use Following Cardiac Interventions in Children with Trisomy 13 and Trisomy 18 and Congenital Heart Disease (2018)

Trisomy 18 Syndrome: An Ethical Dilemma in the Neonatal Intensive Care Unit (2018)

Long-Term Outcomes of Children with Trisomy 13 and 18 After Congenital Heart Disease Interventions (2017)

Survival of Children with Trisomy 13 and Trisomy 18: A Multi-State Population-Based Study (2016)

Parental Hopes, Interventions, and Survival of Neonates with Trisomy 13 and Trisomy 18 (2016)

Mortality and Morbidity of VLBW Infants with Trisomy 13 or Trisomy 18 (2014)

Perinatal Management of Trisomy 18: A Survey of Obstetricians in Australia, New Zealand and the UK (2014)

Our Children Are Not a Diagnosis: The Experience of Parents who Continue Their Pregnancy After a Prenatal Diagnosis of Trisomy 13 or 18 (2013)

Trisomy 18 and Complex Heart Disease: Seeking the Threshold Benefit (2013)

Fatally flawed? A review and ethical analysis of lethal congenital malformations (2012)

The Experience of Families with Children with Trisomy 13 and 18 in Social Networks (2012)

 

Grief

 The Loss of a Grandchild During Pregnancy: An Exploration of Long-Term Outcomes for Grandparents and Their Families (2022)

 

Lethal Language

Should We Stop Calling Thanatophoric Dysplasia a Lethal Condition? A Case Report of a Long-Term Survivor (2020) 

Ethical Language and Decision-Making for Prenatally Diagnosed Lethal Malformations (2014)

The Term Incompatible with Life is Incompatible with the Best Care (2014)

Fatally Flawed? A Review and Ethical Analysis of Lethal Congenital Malformations (2012)

Medical Perspectives

The Impact of Implicit and Explicit Bias About Disabilities on Parent Experiences and Information Provided During Prenatal Screening and Testing (2023)

Attitudes of Maternal Fetal Medicine Specialists on Prenatal Diagnosis, Disability, and Termination (2023)

Perinatal Palliative Care: A Qualitative Study Evaluating the Perspectives of Pregnancy Counselors (2019)

Obstetricians’ Views on the Ethics of Cardiac Surgery for Newborns with Common Aneuploidies (2018)

“I think we’ve got too many tests!”: Prenatal Providers’ Reflections on Ethical and Clinical Challenges in the Practice Integration of Cell-Free DNA Screening (2016)

In What Circumstances will a Neonatologist Decide a Patient is Not a Resuscitation Candidate? (2015)

Perinatal Management of Trisomy 18: A Survey of Obstetricians in Australia, New Zealand and the UK (2014)

Survey of Physicians’ Approach to Severe Fetal Anomalies (2011)

Health care professionals’ attitudes about pregnancy termination for different fetal anomalies (2012)

 

NIPT/Cell-Free DNA Testing

NIPT/Cell Free DNA Screening Predictive Value Online Calculator

Abnormal Prenatal Cell-Free DNA Screening Results (2020)

Rethinking Counselling in Prenatal Screening: An Ethical Analysis of Informed Consent in the Context of Non-Invasive Prenatal Testing (NIPT) (2020)

No US commercial NIPS Labs Fully Follow ACMG’s 2016 Guidelines (2019)

Outcomes in Pregnancies with a Confined Placental Mosaicism and Implications for Prenatal Screening Using Cell-Free DNA (2019)

Informed Decision-Making About Prenatal cfDNA Screening: An Assessment of Written Materials (2016)

“I think we’ve got too many tests!”: Prenatal Providers’ Reflections on Ethical and Clinical Challenges in the Practice Integration of Cell-Free DNA Screening (2016)

Osteogenesis Imperfecta (OI)

What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong? (2016)

Fatally flawed? A review and ethical analysis of lethal congenital malformations (2012)

Patau Syndrome (Trisomy 13)

Mortality and Resource Use Following Cardiac Interventions in Children with Trisomy 13 and Trisomy 18 and Congenital Heart Disease (2018)

Obstetricians’ Views on the Ethics of Cardiac Surgery for Newborns with Common Aneuploidies (2018)

Trisomy 18 Syndrome: An Ethical Dilemma in the Neonatal Intensive Care Unit (2018)

Long-Term Outcomes of Children with Trisomy 13 and 18 After Congenital Heart Disease Interventions (2017)

Parental Hopes, Interventions, and Survival of Neonates with Trisomy 13 and Trisomy 18 (2016)

Survival of Children with Trisomy 13 and Trisomy 18: A Multi-State Population-Based Study (2016)

Mortality and Morbidity of VLBW Infants with Trisomy 13 or Trisomy 18 (2014)

Our Children Are Not a Diagnosis: The Experience of Parents who Continue Their Pregnancy After a Prenatal Diagnosis of Trisomy 13 or 18 (2013)

Better Prognosis in Newborns with Trisomy 13 Who Received Intensive Treatments: A Retrospective Study of 16 Patients (2012)

Fatally Flawed? A Review and Ethical Analysis of Lethal Congenital Malformations (2012)

The Experience of Families with Children with Trisomy 13 and 18 in Social Networks (2012)

Prenatal Testing

NIPT/Cell Free DNA Screening Predictive Value Online Calculator

Recommendations to Improve the Patient Experience and Avoid Bias When Prenatal Screening/Testing (2023)

Decision-Making for Prenatal Genetic Screening: How Will Pregnant Women Navigate a Growing Number of Aneuploidy and Carrier Screening Options? (2021)

The Prevalence and the Adding Value of Fetal MRI Imaging in Midline Cerebral Anomalies (2020)

The Psychological Well‐being of Pregnant Women Undergoing Prenatal Testing and Screening: A Narrative Literature Review (2019)

High Risk-What’s next? A Survey Study on Decisional Conflict, Regret, and Satisfaction Among High Risk Pregnant Women (2019)

Making Choices about Further Prenatal Testing for Fetal Aneuploidy (2019)

Parental Decision-Making Following a Prenatal Diagnosis That is Lethal, Life-Limiting, or Has Long Term Implications… (2019)

Supporting Women’s Autonomy in Prenatal Testing (2017)

Early-stage Embryos with Abnormalities May Still Develop into Healthy Babies (2016)

Prenatal Risk Assessment and Diagnosis of Down Syndrome: Strategies for Communicating Well with Patients (2016)

Prenatal Genetic Testing: When is it “Toxic Knowledge”? (2012)

The Portrayal of Down Syndrome in Prenatal Screening Information Pamphlets (2012)

Risk and Uncertainty: Shifting Decision Making for Aneuploidy Screening to the First Trimester of Pregnancy (2011)

Systematic Review of the Literature: Parental Outcomes After Diagnosis of Fetal Anomaly (2011)

Trauma and Prenatal Diagnosis

A Proposed Framework for Perinatal Loss Trauma Informed Care (2023)

The Impact of Implicit and Explicit Bias About Disabilities on Parent Experiences and Information Provided During Prenatal Screening and Testing (2023)

Opportunities to Enhance Parental Well-Being During Prenatal Counseling for Congenital Heart Disease (2022) 

The Impact of Diagnosed Fetal Anomaly, Diagnostic Severity and Prognostic Ambiguity on Parental Depression and Traumatic Stress…(2022)

Mental Health Nursing and the Prenatal Diagnosis of a Congenital Anomaly; A Narrative Experience (2020)

Maternal Psychological Stress after Prenatal Diagnosis of Congenital Heart Disease (2012)

Antenatal Diagnosis of Congenital  Anomaly: A Really Traumatic Experience? (2011)