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. I show that the Ethical, Legal, and Social Implications, or ELSI, research program of the HGP was inscribed with the competencies of the professional field of bioethics, which had lent itself useful for governing biomedical science and technology earlier in the 20th century. Drawing on a sociological framework for understanding the development of professional bioethics, I describe the development of ELSI, and I note how the given-in-advance boundaries between authorized and unauthorized questions shaped not only its formation but also biased technologically based conceptualizations of social problems and potential solutions.

The Report of the Committee of Inquiry
into Human Fertilisation and Embryology, commonly called the Warnock
Report after the chair of the committee Mary Warnock, is the 1984
publication of a UK governmental inquiry into the social impacts of
infertility treatment and embryological research. The birth of Louise
Brown in 1978 in Oldham, UK, sparked debate about reproductive and
embryological technologies. Brown was conceived through in vitro
fertilization (IVF), a process of fertilization that occurs outside of
the body of the woman. At the time IVF was largely unregulated in the
UK, both in law and within the protocol of the National Health Service
(NHS), headquartered in London, UK. The Warnock Report recommended, and
is credited with, establishing a governmental organization to regulate
infertility treatments such as IVF and embryological research in
general. In 1990, the UK established this governmental organization as
the Human Fertilisation and Embryology Authority (HFEA) in London.

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. Moore created the precedent in California that although physicians are required to disclose their research interests to their patients, patients do not have property-related claims to any samples that their physicians take from their body. The Supreme Court of California’s decision in Moore v. Regents of the University of California enabled physicians and researchers to retain legal ownership on samples taken from their patients’ bodies so that they can conduct what the court describes as socially important medical research, such as work on reproductive cancers or developmental disorders.

In 2004, the South Korean geneticist Woo-Suk Hwang published what was widely regarded as the most important research finding in biotechnology that year. In the prestigious American journal Science, he claimed that he had succeeded in cloning a human blastocyst, which is an embryo in its early developmental stages (Hwang et al. 2004). A year later, in a second Science article, he made the earth-shattering announcement that he had derived eleven embryonic stem cell lines using his cloning technique (Hwang et al. 2005). The international scientific community was stunned. American scientists publicly fretted that President George W. Bush‘s executive order in 2001 which limited federal funding for stem-cell research in the United States had put American bioscience behind the Koreans’ (Paarlberg 2005).

Surgeons sometimes operate on the developing fetuses in utero of pregnant women as a medical intervention to treat a number of congential abnormalities, operations that have ethical aspects. A. William Liley performed the first successful fetal surgery, a blood transfusion, in New Zealand in 1963 to counteract the effects of hemolytic anemia, or Rh disease. The ethical discussions surrounding fetal surgery are complex and are still being defined, as fetal surgery represents an emerging field of in utero medical interventions that impact the quality of life for both pregnant women and fetuses. Such discussions involve the ethical relationships between parents, fetuses, doctors, and health care organizations like hospitals. What may benefit the fetus may harm the pregnant woman, and what may benefit the pregnant woman could negatively impact the viability of the pregnancy. Risks to the pregnant woman include preterm membrane rupture, preterm labor, wound infection, hemorrhage, loss of uterus, damage to the organs near the uterus, and possibly death. Fetal surgery does not always improve the quality of life for the developing fetus, and the risks and benefits of fetal surgery must be carefully weighed and discussed between the medical team, the pregnant woman, and her partner to customize the most ethical plan of action

Eugenical Sterilization in the United States is a 1922 book in which author Harry H. Laughlin argues for the necessity of compulsory sterilization in the United States based on the principles of eugenics. The eugenics movement of the early twentieth century in the US focused on altering the genetic makeup of the US population by regulating immigration and sterilization, and by discouraging interracial procreation, then called miscegenation. Published in December 1922 by the Psychopathic Laboratory of the Municipal Court of Chicago in Chicago, Illinois, the book reports Laughlin's analysis of how states could benefit from sterilizing their mentally disabled residents, and it reprinted his model sterilization law, which he encouraged state governments to adopt. Laughlin's model sterilization law stressed the need for the sterilization of populations that Laughlin deemed inadequate for reasons ranging from physical appearance to socioeconomic status. The document influenced twentieth century legislation in the US about reproduction and compulsory sterilization.

Fetal surgeries are a range of medical interventions performed in utero on the developing fetus of a pregnant woman to treat a number of congenital abnormalities. The first documented fetal surgical procedure occurred in 1963 in Auckland, New Zealand when A. William Liley treated fetal hemolytic anemia, or Rh disease, with a blood transfusion. Three surgical techniques comprise many fetal surgeries: hysterotomy, or open abdominal surgery performed on the woman; fetoscopy, for which doctors use a fiber-optic endoscope to view and make repairs to abnormalities in the fetus; and percutaneous fetal theray, for which doctors use a catheter to drain excess fluid. As the sophistication of surgical and neonatal technology advanced in the late twentieth century, so too did the number of congenital disorders fetal surgeons treated, such as mylomeningeocele, blocked urinary tracts, twin-to-twin transfusion syndrome, polyhydramnios, diaphragmatic hernia, tracheal occlusion, and other anomalies. Many discuss the ethics of fetal surgery, as many consider it contentious, as fetal surgery risks both the developing fetus and the pregnant woman, and at times it only marginally improves patient outcomes. Some argue, however, that as more advanced diagnostic equipment and surgical methods improve, advanced clinical trials in a few conditions may demonstrate more benefits than risks to both pregnant women and fetuses.