Human Experimentation at Willowbrook   Human Experimentation at Willowbrook By Betty Arkhurst- Weston, Reginald Degrafenreid, & Tamika Missouri

WILLOWBROOK Who is Dr. Saul Krugman Willowbrook State school in Staten Island, N.Y. Housed and cared for children with intellectual disabilities. Epidemic of hepatitis, experiment conducted From 1955 to more than 15 years later. Children were deliberately infected with hepatitis virus from sick children, some received gamma globulin antibodies from blood of patients with hepatitis and some given protective antibodies. Poor sanitary conditions. Over populated building, instead of housing 4000 children, the number was 6500. Called the “Snake Pit” by John F. Kennedy.

Review of Literature Ethics in Research of Children and Individuals with Mental Disabilities Children and mentally incapacitated individuals are unique to research because of their inability to make informed decisions related to understanding, processing, and engaging in studies (Gandhi, 2005). The Nuremberg Code of 1947 The Belmont Report of 1979

Review of Literature cont’d Beecher’s Criticism of the Willowbrook Study Beecher’s criticism was based on protecting vulnerable subjects of research and ensuring that investigators were responsible while conducting studies. Research and the Individual (Beecher, 1970). Trailblazed future condemnations of the Willowbrook Study Declaration of Helsinki, “ there is no right to risk injury to one person for the benefits of others” (WMA, 2013).

Review of Literature cont’d Advantages of the Willowbrook Study Experimentation at Willowbrook offered benefits to knowledge gained in medical and clinical practice. Saul Krugman distinguished that there were two strands of Hepatitis, A & B (Krugman & Giles, 1971). Injections of gamma globulin have protective properties against Hepatitis A infection (Krogman & Giles, 1971). Krugman’s studies paved the way for the later development of the Hepatitis B vaccination by Baruch Blumberg and Irving Millman in 1970, although it was not available commercially until 1981 (Krugman, 1982).

Pivotal Moments Associated with The Willowbrook Study Review of Literature Pivotal Moments Associated with The Willowbrook Study In1971, The Staten Island Advance published articles giving the public the first glimpse at the horrible conditions at Willowbrook. Newscasts about conditions at Willowbrook, The Last Disgrace, created national scandal. (Geraldo Rivera, 1972). Federal court decision,”Consent Judgement” of 1975 ~ declared “revolutionary”. Willowbrook closure in 1987. Resulted in placing disabled individuals in community residences, expanding day programs, and the developing special education programs. Willowbrook, winner of the “Best Short Film” category at the 2012 Boston Film Festival.

Exploration and Analysis ethical Issues Respect of Person: Autonomy. Non- Maleficence: Decrease harm, increase benefit. Beneficence: Other person best interest at heart. Justice: fairness and no exploitation.

Willowbrook Study Consent Letter November 15, 1958 Willowbrook Study Staten Island, New York Dear Mrs. __________: We are studying the possibility of preventing epidemics of hepatitis on a new principle. Virus is introduced and gamma globulin given later to some, so that either no attack or only a mild attack of hepatitis is expected to follow. This may give the children immunity against this disease for life. We should like to give your child this new form of prevention with the hope that it will afford protection. Permission form is enclosed for your consideration. If you wish to have your children given the benefit of this new preventive, will you so signify by signing the form. (Rothman, 1984).

Current laws and use of human subjects in research. Developmental Disabilities Assistance and Bill of Rights Act of 1975 The Education for All Handicapped Children Act of 1975 The Civil Rights of Institution Persons Act of 1980

Current laws and use of human subjects in research. Additional regulation implemented include: Informed consent Institutional Review Board (IRB)

Video The Last Disgrace https://www.youtube.com/redirect?q=http%3A%2F%2Fsproutflix.org%2Fstore%2Fwillowbrook-last-great-disgrace&redir_token=dOdRBDcWFfSjXqynO3UvZKzshjd8MTQyMTc1Nzk4MkAxNDIxNjcxNTgy

References Beecher, H. K. (1970). Research and the Individual Code, N. (1949). The Nuremberg Code. Trials of war criminals before the Nuremberg military tribunals under control council law, (10), 181-182. Gandhi, R. (2005). Research involving children: regulations, review boards and reform. J. Health Care L. & Pol'y, 8, 264. Krugman, S., Giles, J. P., & Hammond, J. (1971). Viral hepatitis, type B (MS-2 strain): Studies on active immunization. Jama, 217(1), 41-45. Krugman, S. (1982). The newly licensed hepatitis B vaccine: Characteristics and indications for use. JAMA, 247(14), 2012-2015. Rivera, G. (1972). Willowbrook: The Last Great Disgrace. Westchester Community College. Rivera, G. (1972). The last disgrace. Retrieved from www.youtube.com/willowbrooklastdisgrace. Rothman, D., and Rothman, S. 1984. The Willowbrook Wars. Cambridge: HarperCollins, pages 265–266 United States Department of Health & Human Services. (1979). National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Bethesda, MD.  The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Retrieved from www.hhs.gov./ohrp/human World Medical Association. (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects.JAMA: the journal of the American Medical Association, 310(20), 2191.