History, Eugenics and Genetics Personal Genetics Education Project (pgEd)

1. History, Eugenics and Genetics Personal Genetics Education Project (pgEd) Harvard Medical School - Wu Laboratory www.pged.org

2. The Beery twins, Noah and Alexis http://dystonia.thebeerys.com/

3. Genome sequencing technology Oxford Nanopore Technologies MinION

4. Molly and Adam Nash Illness: Fanconi anemia (disorder of DNA repair) Cure: PGD, umbilical cord blood stem cells Photo by Mark Engebretson, University of Minnesota

5. Pre-implantation Genetic Diagnosis (PGD) Biazotti et al (2015), CC BY 4.0

6. Public attitudes regarding the use of PGD Data from Hudson KL, Preimplantation Genetic Diagnosis: Public Policy and Public Attitudes (2006)

7. American Eugenics Movement • Social movement that worked to “improve” society by encouraging or discouraging people to have babies • Promoted reproduction by people or groups with “positive” qualities • Discouraged or sometimes • stopped reproduction by • groups with “negative” qualities • State and Federal laws addressing issues ranging from immigration to mandatory sterilization • Began in US in early 1900s

8. A Changing American Society:Immigration and Urbanization Photo by Lewis Hine (via the Brooklyn Museum) Photo by Jacob Riis (via the Preus Museum)

9. Categorizing people: From an Exhibit of Work and Educational Campaign for Juvenile Mental Defectives, 1913 Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory

10. “Fitter Family” contests: 1920s – 1940s Georgia State Fair 1924 Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory

11. Laws Against Interracial Marriage American Philosophical Society. Noncommercial, educational use only. Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory

12. Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory

13. Carrie Buck: Sterilized without her consent Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory

14. Supreme Court Ruling: Buck v. Bell allows forced sterilization Quote source: Buck v. Bell, 274 US 200 - Supreme Court 1927 US Library of Congress “...society can prevent those who are manifestly unfit from continuing their kind… Three generations of imbeciles are enough.” - Justice Oliver Wendell Holmes, Jr.

15. Voices against eugenics Raymond Pearl Eugenics preaching is “contrary to the best established facts of genetical science.” Carnegie Institution Visiting Committee, 1935: Most of the ERO’s work was without scientific merit and it should cease sponsorship of programs in immigration restriction, sterilization, and race betterment. US Library of Congress Slide courtesy of the DNA Learning Center, Cold Spring Harbor Laboratory

16. Nazi Propaganda: “We do not stand alone” http://en.wikipedia.org/wiki/File:Wir_stehen_nicht_allein.jpg

17. Nuremberg Code 4 of the 10 directives for Human Subjects Research • 1. The voluntary consent of the human subject is absolutely essential…  • 2. The experiment should be such as to yield fruitful results for the good of society, …  • 4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury. • 9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end… http://www.hhs.gov/ohrp/archive/nurcode.html

18. Pamphlet from the Human Betterment League of North Carolina – 1950 Via the North Carolina State Documents Collection. State Library of North Carolina

19. Protests against forced sterilization Southern Conference Educational Fund (SCEF), via Wikimedia Commons, CC BY-ND 3.0

20. Elaine Riddick – sterilized without her knowledge at the age of 14 Photo provided to ABC News, courtesy of Elaine Riddick

21. North Carolina • Eugenic sterilization law enacted February 18, 1929. • Sterilization suitable for “mentally defective persons.” • “The 7,600 victims of the program, which was dissolved in 1977, were largely women and disproportionately members of minorities.” (New York Times). • Any person (e.g., a neighbor) could request someone be sterilized, which would be considered by a state sterilization board. • After 10 years of debate, the NC legislature passed a budget to provide $10 million to victims. (As of 2013, roughly 200 victims have come forward, so each would receive about $50,000.) • This is the first time reparations have been granted to victims of eugenic sterilization. Slide adapted from DNA Learning Center, Cold Spring Harbor Laboratory

22. Ethical, Legal and Social Issues (ELSI) Program http://www.genome.gov/issues/

23. Presidential Commission for the Study of Bioethical Issues http://www.bioethics.gov/

24. Image credits Slide 2: Retty Beery, The Beerys Dystonia Support Site Web Site (http://dystonia.thebeerys.com/, accessed Jan 25, 2016). Slide 3: Oxford Nanopore Technologies (https://nanoporetech.com/downloads/MinION-hand.jpg, accessed Jan 25, 2016). Slide 4: Photo by Mark Engebretson, University of Minnesota. Slide 5: Figure 2 from Biazotti MC et al, Preimplantation genetic diagnosis for cystic fibrosis: a case report (2015). Published in Einstein (São Paulo), 13(1), 110-113. (https://dx.doi.org/10.1590/S1679-45082015RC2738, accessed Jan 25, 2016). Available under a Creative Commons Attribution 4.0 International license (http://creativecommons.org/licenses/by/4.0/deed.en). Slide 7: Burlington Free Press, October 29, 1926, p. 1. Clipping from Paul Amos Moody Papers, Box 181, Truman Allen file, University of Vermont Archives. Via Vermont Eugenics: A Documentary History (http://www.uvm.edu/~eugenics/images/hpbfp102926.html, accessed Feb 1, 2016). Slide 8: (left) “Climbing into the Promised Land Ellis Island” by Lewis Hine, circa 1908. Source: Online Collection of the Brooklyn Museum. Via Wikimedia Commons (https://commons.wikimedia.org/wiki/File:Brooklyn_Museum_-_Climbing_into_the_Promised_Land_Ellis_Island_-_Lewis_Wickes_Hine.jpg, accessed Feb 1, 2016). Slide 8 (right) “Bandit’s Roost” by Jacob Riis, 1888. Via the Preus Museum (https://www.flickr.com/photos/preusmuseum/5389939434/in/photolist-9dhRdf, accessed Feb 1, 2016). Slide 9: "Exhibit of work and educational campaign for juvenile mental defectives,” 1906. Source: American Philosophical Society, ERO, MSC77,Ser1,Box35: Trait Files. Via the Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory, ID #348 (http://www.eugenicsarchive.org/eugenics/view_image.pl?id=348, accessed Feb 1, 2016). pgEd has cropped the original image.

25. Image credits Slide 10: “Fitter Families contestants at Georgia State Fair, Savannah,” 1924. Source: American Philosophical Society, ERO, MSC77,SerVI,Box 4, FF Studies, KS Free Fair. Via the Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory, ID#190 (http://www.eugenicsarchive.org/eugenics/view_image.pl?id=190, accessed Feb 1, 2016). Slide 11: "The New Virginia Law to Preserve Racial Integrity" by W. A. Plecker, Virginia Health Bulletin (vol. 16:2), 1924. Source: American Philosophical Society, Dav, B:D27.,Harriman, Mrs. E.H. Via the Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory, ID# 436 (http://www.eugenicsarchive.org/html/eugenics/static/images/436.html, accessed Feb 1, 2016). pgEd has cropped the original image. Slide 12: "Family-stock of a woman sterilized by the state of Maine,” circa 1935. Source: The Harry H. Laughlin Papers, Truman State University, Lantern Slides, IBM Box,Box 10. Via the Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory, ID# 958 (http://www.eugenicsarchive.org/html/eugenics/static/images/958.html, accessed Feb 1, 2016). Slide 13: “Carrie and Emma Buck at the Virginia Colony for Epileptics and Feebleminded” by A.H. Estabrook, 1924. Source: University of Albany, SUNY, Estabrook, SPE,XMS 80.9 Bx 1 folder 1-41. Via the Eugenics Image Archive, DNA Learning Center, Cold Spring Harbor Laboratory, ID# 1287 (http://www.eugenicsarchive.org/eugenics/view_image.pl?id=1287, accessed Feb 1, 2016). Slide 14: “Justice Oliver Wendell Holmes,” circa 1924, United States Library of Congress. (http://loc.gov/pictures/resource/npcc.26412/, accessed Feb 1, 2016). Slide 15: “Dr. Raymond Pearl,” circa. 1910-1915, United States Library of Congress. (http://loc.gov/pictures/resource/ggbain.12452/, accessed Feb 1, 2016). Slide 16: Nazi propaganda poster, Neues Volk, March 1, 1936, p.37. Scan from Robert Proctor, Racial Hygiene: Medicine under the Nazis (Cambridge, MA: Harvard University Press), page 96. Via Wikipedia (http://en.wikipedia.org/wiki/File:Wir_stehen_nicht_allein.jpg, accessed Feb 1, 2016).

26. Image credits Slide 18: “You wouldn’t expect –” Human Betterment League of North Carolina, 1950. Via the North Carolina State Documents Collection. State Library of North Carolina (http://digital.ncdcr.gov/cdm/ref/collection/p249901coll37/id/14969, accessed Jan 12, 2016). Slide 19: The Southern Conference Educational Fund (SCEF), Louisville, Ky. Via Wikimedia Commons (https://commons.wikimedia.org/wiki/File:Sterilization_protest.jpg, accessed Feb 1, 2016). Available under a Creative Commons Attribution-NoDerivs 3.0 Unported license (http://creativecommons.org/licenses/by-nd/3.0/). Slide 20: Provided to ABC News, courtesy of Elaine Riddick (http://abcnews.go.com/Health/WomensHealth/sterilizing-sick-poor-cut-welfare-costs-north-carolinas/story?id=14093458, accessed Feb 1, 2016). Slide 22: National Human Genome Research Institute, National Institute of Health, http://www.genome.gov/Issues/, accessed Feb 1, 2016). Slide 23: Presidential Commission for the Study of Bioethical Issues, http://www.bioethics.gov/Issues/, accessed Feb 3, 2016).

27. References Slide 6: Data from “Preimplantation Genetic Diagnosis: Public Policy and Public Attitudes,” Hudson, K. 2006. Fertility and Sterility 85 (6): 1638-1645. (DOI: http://dx.doi.org/10.1016/j.fertnstert.2006.01.014, accessed Jan 25, 2016). Slide 7: Excerpts from the Nuremberg Code (http://www.hhs.gov/ohrp/archive/nurcode.html, accessed Feb 1, 2016). Slide 14: Quote, Buck v. Bell. 274 U.S. 200, 1927. (https://supreme.justia.com/cases/federal/us/274/200/case.html, accessed Feb 1, 2016). Slide 21: Quote, “Payments for Victims of Eugenics Are Shelved” by Kim Severson, The New York Times, June 20, 2012 (http://www.nytimes.com/2012/06/21/us/north-carolina-eugenics-compensation-program-shelved.html), accessed Jan 13, 2016).