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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.
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
Sex Determination in Humans
In humans, sex determination is the process that determines the biological sex of an offspring and, as a result, the sexual characteristics that they will develop. Humans typically develop as either male or female, primarily depending on the combination of sex chromosomes that they inherit from their parents. The human sex chromosomes, called X and Y, are structures in human cells made up of tightly bound deoxyribonucleic acid, or DNA, and proteins.
Human Papillomavirus (HPV) Strains 16 and 18
The Human Papillomavirus (HPV) strains 16 and 18 are the two most common HPV strains that lead to cases of genital cancer. HPV is the most commonly sexually transmitted disease, resulting in more than fourteen million cases per year in the United States alone. When left untreated, HPV leads to high risks of cervical, vaginal, vulvar, anal, and penile cancers. In 1983 and 1984 in Germany, physician Harald zur Hausen found that two HPV strains, HPV-16 and HPV-18, caused cervical cancer in women. In the early twenty first century, pharmaceutical companies Merck & Co.
HeLa Cell Line
The HeLa cell line was the first immortal human cell line that George Otto Gey, Margaret Gey, and Mary Kucibek first isolated from Henrietta Lacks and developed at The Johns Hopkins Hospital in Baltimore, Maryland, in 1951. An immortal human cell line is a cluster of cells that continuously multiply on their own outside of the human from which they originated. Scientists use immortal human cell lines in their research to investigate how cells function in humans.
Subject: Technologies, Experiments, People, Ethics
The US President's Council on Bioethics (2001-2009)
The US President's Council on Bioethics was an organization headquartered in Washington D.C. that was chartered to advise then US President George W. Bush on ethical issues related to biomedical science and technology. In November 2001, US President George W. Bush created the President's Council on Bioethics (PCB). Convened during a nationwide cloning and embryonic stem cell research debate, the Council stated that it worked to address arguments about ethics from many different perspectives.
Subject: Organizations, Legal, Ethics
45 CFR 46: Protection of Human Subjects under United States Law (1974)
In the United States, the Code of Federal Regulations Title 45: Public Welfare, part 46 (45 CFR 46) provides protection for human subjects in research carried out or supported by most federal departments and agencies. 45 CFR 46 created a common federal policy for the protection of such human subjects that was accepted by the Office of Science and Technology Policy and issued by each of the departments and agencies listed in the document.
“Sierra Leone’s Former Child Soldiers: A Longitudinal Study of Risk, Protective Factors, and Mental Health” (2010), by Theresa S. Betancourt, Robert T. Brennan, Julia Rubin-Smith, Garrett M. Fitzmaurice, and Stephen E. Gilman
In 2010, Theresa S. Betancourt, Robert T. Brennan, Julia Rubin-Smith, Garrett M. Fitzmaurice, and Stephen E. Gliman, published “Sierra Leone’s Former Child Soldiers: A Longitudinal Study of Risk, Protective Factors, and Mental Health” in Journal of the American Academy of Child and Adolescent Psychiatry. The paper describes the results of a longitudinal study of former Sierra Leone child soldiers that examines how protective and risk factors affect children’s post-conflict mental health outcomes over several years of development.
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.
"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.
San Diego Zoo Institute for Conservation Research
The San Diego Zoo Institute for Conservation Research (SDZICR) in San Diego, California, is a research organization that works to generate, use, and share information for the conservation of wildlife and their habitats. In 1975, Kurt Benirschke, a researcher at the University of California, San Diego (UCSD) who studied human and animal reproduction, and Charles Bieler, the director of the San Diego Zoo, collaborated to form the Center for Reproduction of Endangered Species (CRES).
“Annual Research Review: Prenatal Stress and the Origins of Psychopathology: An Evolutionary Perspective” (2011), by Vivette Glover
In 2011, fetal researcher Vivette Glover published “Annual Research Review: Prenatal Stress and the Origins of Psychopathology: An Evolutionary Perspective,” hereafter, “Prenatal Stress and the Origins of Psychopathology,” in the Journal of Child Psychology and Psychiatry. In that article, Glover explained how an evolutionary perspective may be useful in understanding the effects of fetal programming. Fetal programming is a hypothesis that attempts to explain how factors during pregnancy can affect fetuses after birth.
Subject: Theories, Reproduction, Disorders
“The Science and Ethics of Making Part-Human Animals in Stem Cell Biology” (2006), by Jason Scott Robert
In 2006, bioethicist Jason Scott Robert published “The Science and Ethics of Making Part-Human Animals in Stem Cell Biology” in The FASEB Journal. There, he reviews the scientific and ethical justifications and restrictions on creating part-human animals. Robert describes part-human animals, otherwise known as chimeras, as those resulting from the intentional combination of human and nonhuman cells, tissues, or organs at any stage of development.
Subject: Ethics, Publications, Organisms
History of the Monash IVF Research Program from 1971 to 1989
In 1971, a group of researchers founded the Monash IVF Research Program with the mission to discover how in vitro fertilization, or IVF, techniques could become a treatment for infertility in both men and women. The program included researcher Carl Wood and colleagues John Leeton, Alex Lopata, Alan Trounson, and Ian Johnston at the Queen Victoria Medical Center and Royal Women’s Hospital in Melbourne, Australia. Since the program’s establishment in 1971, the Monash IVF Research Program has helped to develop and implement many IVF technologies still used in clinical practice as of 2020.
Subject: Organizations, Reproduction
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
“Part-Human Chimeras: Worrying the Facts, Probing the Ethics” (2007), by Françoise Baylis and Jason Scott Robert
In 2007, Françoise Baylis and Jason Scott Robert published “Part-Human Chimeras: Worrying the Facts, Probing the Ethics” in The American Journal of Bioethics. Within their article, hereafter “Part-Human Chimeras,” the authors offer corrections on “Thinking About the Human Neuron Mouse,” a report published in The American Journal of Bioethics in 2007 by Henry Greely, Mildred K. Cho, Linda F. Hogle, and Debra M. Satz, which discussed the debate on the ethics of creating part-human chimeras. Chimeras are organisms that contain two or more genetically distinct cell lines.
"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.
“HPV in the Etiology of Human Cancer” (2006) by Nubia Muñoz, Xavier Castellsagué, Amy Berrington de González, and Lutz Gissmann
In 2006, the article “HPV in the Etiology of Human Cancer,” hereafter “HPV and Etiology,” by Nubia Muñoz, Xavier Castellsagué, Amy Berrington de González, and Lutz Gissmann, appeared as the first chapter in the twenty-fourth volume of the journal Vaccine. Muñoz and colleagues discuss the role of the Human Papillomavirus, or HPV, in uterine cervical cancers. The authors introduce the mechanisms of HPV infection that lead to genital and non-genital cancers, establishing a link between HPV and multiple human cancers.
Subject: Disorders, Processes, Technologies
“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
“Causes of Death Among Stillbirths” (2011), by Stillbirth Collaborative Research Network Writing Group
In December 2011, the Stillbirth Collaborative Research Network, or SCRN, published the article “Causes of Death Among Stillbirths” in The Journal of the American Medical Association. The authors of the article investigate the causes of stillbirth and possible reasons for the racial, ethnic, and geographic disparities in stillbirth rates. According to the Centers for Disease Control and Prevention, or CDC, stillbirth is the death of a fetus at twenty or more weeks during pregnancy.
South Korea's Bioethics and Biosafety Act (2005)
The South Korean government passed the Bioethics and Biosafety Act, known henceforth as the Bioethics Act, in 2003 and it took effect in 2005. South Korea's Ministry of Health and Welfare proposed the law to the South Korean National Assembly to allow the progress of biotechnology and life sciences research in South Korea while protecting human research subjects with practices such as informed consent. The Bioethics Act establishes a National Bioethics Committee in Seoul, South Korea.
A Series of YouTube Videos Detailing the “CRISPR Babies” Experiment (2018), by He Jiankui
In 2018, He Jiankui uploaded a series of videos to a YouTube channel titled “The He Lab” that detailed one of the first instances of a successful human birth after genome editing had been performed on an embryo using CRISPR-cas9. CRISPR-cas9 is a genome editing tool derived from bacteria that can be used to cut out and replace specific sequences of DNA. He genetically modified embryos at his lab in Shenzhen, China, to make them immune to contracting HIV through indirect perinatal transmission from their father, who was infected with the virus.
Subject: Publications, Experiments, Ethics
Assisted Human Reproduction Act (2004)
The Assisted Human Reproduction Act (AHR Act) is a piece of federal legislation passed by the Parliament of Canada. The Act came into force on 29 March 2004. Many sections of the Act were struck down following a 2010 Supreme Court of Canada ruling on its constitutionality. The AHR Act sets a legislative and regulatory framework for the use of reproductive technologies such as in vitro fertilization and related services including surrogacy and gamete donation. The Act also regulates research in Canada involving in vitro embryos.
Subject: Legal, Reproduction, Ethics
Reduction of Maternal-Infant Transmission of Human Immunodeficiency Virus with Zidovudine Treatment
In 1994, Edward M. Connor and colleagues published “Reduction of Maternal-Infant Transmission of Human Immunodeficiency Virus Type 1 with Zidovudine Treatment.” Their study summarized how to reduce the transfer of human immunodeficiency virus, or HIV, from pregnant women to their fetuses with Zidovudine, otherwise known as AZT. HIV is a virus that weakens the immune system by destroying white blood cells, a part of the body’s immune system. Fifteen to forty percent of infants born to HIV-positive mothers become infected during fetal development, labor and delivery, or breast-feeding.
Thesis: The Human Genome Project and ELSI: The Imperative of Technology and Reduction of the Public Ethics Debate
Portrayed as the Manhattan Project of the late 20th century, the Human Genome Project, or HGP, not only undertook the science of sequencing the human genome but also the ethics of it. For this thesis I ask how the HGP did this; what was the range of possibilities of goods and evils imagined by the HGP; and what, if anything, was left out.
Format: Essays and Theses
Subject: Ethics, Organizations