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The National Society of Genetic Counselors (NSGC)
Audrey Heimler and colleagues founded the National Society of Genetic Counselors (NSGC) in 1979 in New Hyde Park in New York, New York. Her stated goals were to establish the field of genetic counseling within biomedicine and to coordinate counselors’ voices, so that physicians and others in the medical industry would not dictate the future of the field. Genetic counselors inform patients about the potential for inherited diseases passed on through family lineages and help to navigate the options available.
National Association for Down Syndrome (1960–)
The National Association for Down Syndrome, or NADS, is an organization that was founded in 1960 by Kathryn McGee in Chicago, Illinois, to support people with Down syndrome and their families in improving their quality of life. Originally named the Mongoloid Developmental Council, NADS is one of the oldest organizations serving people with Down syndrome and their families in the United States. According to NADS, Down syndrome is a genetic condition that occurs in one in every seven hundred ninety-two people and that causes delays in physical and intellectual development.
Subject: Disorders, Organizations, People, Ethics
Countdown to Life: The Extraordinary Making of You (2015), by the British Broadcasting Corporation and The Open University
In 2015, the British Broadcasting Corporation (BBC) partnered with The Open University to produce the three-part documentary series, Countdown to Life: The Extraordinary Making of You. Michael Mosley, a British television producer and journalist, hosts the documentary. Along with narrating animated scenes of a growing fetus in the womb, Mosley meets with individuals around the world who experienced mutations that can arise in the womb. Introduced over the course of the three episodes, several people share their personal stories of how their bodies did not develop correctly prior to birth.
Title 1, Subtitle B, Parts I, II, and III of the “National Institutes of Health Revitalization Act of 1993” (1993)
In 1993, the NIH published the Revitalization Act that established guidelines for minorities’ and women’s participation in clinical research. Before the 1990s, investigators largely excluded women from their research based on the 1979 guidance from the US Food and Drug Administration, or FDA. The FDA urged investigators to exclude any woman who was or could become, pregnant to protect the woman and any developing fetuses from harm.
Chapter One and Chapter Two from “Program of Action of the International Conference on Population and Development” (1994), by United Nations Population Fund
“Program of Action of the International Conference on Population and Development” comprises the majority of context within the twenty-year sustainable development plan, International Conference on Population and Development Program of Action, hereafter POA, published in 1994 by the United Nations Population Fund or UNFPA. Given the rising global population, the goal of the POA was to outline the steps governments around the world were to take to achieve sustainable development by 2014.
Subject: Publications, Outreach
Moore v. Regents of the University of California (1990)
On 9 July 1990, in Moore v. Regents of the University of California, the Supreme Court of California ruled in a four-to-three decision that individuals do not have rights to a share in profits earned from research performed on their bodily materials. In its decision, the Supreme Court of California ruled that cancer patient John L. Moore did not have personal property rights to samples or fluids that his physicians took from his body for research purposes.
“Reproductive Injustice: Racial and Gender Discrimination in U.S. Healthcare” (2014), by the Center for Reproductive Rights, the National Latina Institute for Reproductive Health, and SisterSong Women of Color Reproductive Justice Collective
In 2014, the Center for Reproductive Rights, SisterSong Women of Color Reproductive Justice Collective, and the National Latina Institute for Reproductive Health released a co-authored report titled “Reproductive Injustice: Racial and Gender Discrimination in U.S. Healthcare,” hereafter “Reproductive Injustice.” In “Reproductive Injustice,” the organizations evaluate trends in the US federal system concerning racial and gender discrimination in sexual and reproductive healthcare.
Subject: Publications, Organizations, Outreach, Legal
Thesis: Substance-Exposed Newborns in Arizona: An Analysis of Medically, Ethically, and Legally Appropriate Federal and State Responses
In an attempt to discover, analyze, and compile those complex issues with which community health workers should be knowledgeable, this project explores existing federal regulations regarding substance-exposed newborns, compares Arizona’s regulations to Minnesota’s, Virginia’s, and Washington’s, and analyzes prevailing literature in the field about the various implications associated with screening and reporting substance-exposed newborns to law enforcement authorities.
Format: Essays and Theses
United States v. University Hospital (1984)
The US 2nd Circuit Court of Appeals' 1984 decision United States v. University Hospital, State University Hospital of New York at Stony Brook set a significant precedent for affirming parental privilege to make medical decisions for handicapped newborns, while limiting the ability of the federal government to intervene. The ruling stemmed from the 1983 case involving an infant born with severe physical and mental congenital defects; the infant was only identified as Baby Jane Doe.
Subject: Legal, Reproduction
Washington University in St. Louis
Washington University in St. Louis served as the backdrop for many scientific discoveries, including that of nerve growth factor (NGF). Many of the accomplishments in embryology at Washington University can be attributed to the influence of Viktor Hamburger. He served as chair of the zoology department for twenty-five years. One of the few Nobel Prizes given for embryological research was awarded to faculty members Hamburger hired; Rita Levi-Montalcini and Stanley Cohen won for their role in the discovery of nerve growth factor.
National Embryo Donation Center
The National Embryo Donation Center (NEDC) is a non-profit organization that was established in 2002 in Knoxville, Tennessee. The organization is endorsed and supported by several Christian-based associations such as the Christian Medical Association, Bethany Christian Services, and Baptist Health Systems. Its goal is to provide embryo donation and embryo adoption services in order to utilize the large number of embryos that are being cryopreserved as a result of infertility procedures and are no longer needed.
Subject: Organizations, Reproduction
Butt Out for Baby (2003), by Child and Youth Health, South Australia
Butt Out for Baby was a smoking cessation intervention guide, aimed at community health workers, that the Child and Youth Health group published in 2003. The literature was released as the chief publication of the Butt Out for Baby Project, a multiple-resource smoking cessation program directed toward young parents and pregnant smokers, following the revelation of a relatively high rate of smoking among that group. The authors published the pamphlet in Adelaide, South Australia, and did not credit themselves individually.
"Veterans and Agent Orange Update 1996: Summary and Research Highlights" by the US National Academy of Sciences' Institute of Medicine
In March 1996, the National Academy of Sciences of the United States released 'Veterans and Agent Orange Update 1996: Summary and Research Highlights,' which summarized research on the health effects of Agent Orange and other herbicides used in the Vietnam War. In their 1996 report, the National Academy connects Agent Orange exposure with two health conditions: spina bifida, a birth defect that occurs when the spinal cord develops improperly, and peripheral neuropathy, a nervous system condition in which the peripheral nerves are damaged.
In the Womb: Identical Twins (2009), by National Geographic
National Geographic's documentary In the Womb: Identical Twins focuses on the prenatal development of human identical twins. Director Lorne Townend uses three-dimensional (3D) and four-dimensional (4D) ultrasound imaging and microscopy to depict twin development , genetic and epigenetic variations in the fetuses, and methods of fetal survival in the confines of the womb. Artist renditions of scientific data fill in areas of development inaccessible to the imaging tools.
Subject: Outreach, Reproduction
In the Womb (2005), by Toby Mcdonald and National Geographic Channel
Written, produced, and directed by Toby Mcdonald, the 2005 National Geographic Channel film In the Womb uses the most recent technology to provide an intricate glimpse into the prenatal world. The technologies used, which include advanced photography, computer graphics, and 4-D ultrasound imaging, help to realistically illustrate the process of development and to answer questions about the rarely seen development of a human being.
Subject: Outreach, Reproduction
"National Institutes of Health Consensus Development Conference Statement September 22–24, 1980” (1980), by the National Institutes of Health
In 1980 the US National Institutes of Health (NIH) and the US National Institute of Child Health and Human Development (NICHD) released a report titled, “National Institutes of Health Consensus Development Conference Statement September 22–24, 1980.” The report lists recommendations for birth delivery through cesarean sections, a surgical procedure used to deliver the fetus via the pregnant woman’s abdomen. The recommendations arose from the 1980 Consensus Development Conference on Cesarean Childbirth in Bethesda, Maryland.
"Ethical Issues in Human Stem Cell Research: Executive Summary" (1999), by the US National Bioethics Advisory Commission
Ethical Issues in Human Stem Cell Research: Executive Summary was published in September 1999 by The US National Bioethics Advisory Commission in response to a national debate about whether or not the US federal government should fund embryonic stem cell research. Ethical Issues in Human Stem Cell Research recommended policy to US President William Clinton's administration, which advocated for federal spending on the use of stem research on stem cells that came from embryos left over from in vitro fertilization (IVF) fertility treatments.
E.B. Wilson at Columbia University
E.B. Wilson at Columbia University
Agent Orange as a Cause of Spina Bifida
Spina bifida is a birth defect that affects the spines of developing fetuses and infants, and research in the 20th century indicated that chemicals in the herbicide Agent Orange likely lead to the birth defect. People with spina bifida can have nerve damage, paralysis, and mental disabilities. During the Vietnam War in the 1960s, the US military employed Agent Orange and other herbicides to destroy enemy crops and forest cover until 1970.
Menstrual Hygiene Management in Low-Income Countries
Menstrual hygiene management, or MHM, is a concept that concerns girls' and women’s access to the appropriate information and resources to manage menstruation. In December 2012, the Joint Monitoring Program, or JMP, was one of the first organizations to define MHM as a global development goal. Since then, other organizations like WaterAid and the United Nations have expanded MHM’s definition to include menstrual education that is biologically accurate and free of taboo and stigma.
Robert Guthrie (1916–1995)
Robert Guthrie developed a method to test infants for phenylketonuria (PKU) in the United States during the twentieth century. PKU is an inherited condition that causes an amino acid called phenylalanine to build to toxic levels in the blood. Untreated, PKU causes mental disabilities. Before Guthrie’s test, physicians rarely tested infants for PKU and struggled to diagnosis it. Guthrie’s test enabled newborns to be quickly and cheaply screened at birth and then treated for PKU if necessary, preventing irreversible neurological damage.
Thomas Hunt Morgan at Columbia University
Thomas Hunt Morgan at Columbia University
"The Multi-Dimensional Human Embryo"
The Multi-Dimensional Human Embryo website (http://embryo.soad.umich.edu/) is a publicly accessible online database of the first three-dimensional images and animations of human embryos during different stages of development. Both the images and animations were created using magnetic resonance microscopy and compiled for easy access.
Subject: Outreach, Organizations