{"id":5924,"date":"2022-09-01T13:43:26","date_gmt":"2022-09-01T17:43:26","guid":{"rendered":"https:\/\/arlduc.org\/senseandscale\/?p=5924"},"modified":"2026-10-06T21:18:57","modified_gmt":"2026-10-07T01:18:57","slug":"ethical-data-collection-and-unethical-histories","status":"publish","type":"post","link":"https:\/\/arlduc.org\/senseandscale\/?p=5924","title":{"rendered":"Ethical Data Collection and Unethical Histories"},"content":{"rendered":"\n<ul class=\"wp-block-list\">\n<li>Deep Dive Sites:\n<ol class=\"wp-block-list\">\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.cdc.gov\/tuskegee\/timeline.htm\" target=\"_blank\">Tuskegee Timeline<\/a><\/li>\n\n\n\n<li>Holocaust Museum:&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/encyclopedia.ushmm.org\/content\/en\/article\/the-nuremberg-code\" target=\"_blank\">The Nuremberg Code<\/a><\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"http:\/\/www.un.org\/en\/universal-declaration-human-rights\/\" target=\"_blank\">UN Universal Declaration of Human Rights<\/a><\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/ehss.energy.gov\/ohre\/roadmap\/achre\/index.html\" target=\"_blank\">Human Radiation Experiments<\/a>&nbsp;(focus on&nbsp;<a href=\"https:\/\/ehss.energy.gov\/ohre\/roadmap\/achre\/overpt2.html\">Part II. Case Studies<\/a>)<\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"http:\/\/+\" target=\"_blank\">The Legacy of H<\/a><a rel=\"noreferrer noopener\" href=\"https:\/\/www.hopkinsmedicine.org\/henriettalacks\/index.html\" target=\"_blank\">e<\/a><a rel=\"noreferrer noopener\" href=\"http:\/\/+\" target=\"_blank\">nrietta Lacks<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/www.prisonexp.org\/the-story\" target=\"_blank\" rel=\"noreferrer noopener\">The Stanford Prison Experiment<\/a><\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.hhs.gov\/ohrp\/regulations-and-policy\/belmont-report\/index.html\" target=\"_blank\">The Belmont Report<\/a>\n<ul class=\"wp-block-list\">\n<li>If you plan to explore issues of experimental research and informed consent for your project, note that these HHS.gov videos that explain the background and concepts of the Belmont Report. While they&#8217;re both outdated, interestingly, they were first released just a year before Octavia Butler&#8217;s <em>Dawn!<\/em><\/li>\n\n\n\n<li><a href=\"https:\/\/www.youtube.com\/watch?v=_8Ku4b1fW18\" target=\"_blank\" rel=\"noreferrer noopener\">Part 1 \u2013 Evolving Concern: Protection for Human Subjects<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/www.youtube.com\/watch?v=M6AKIIhoFn4\" target=\"_blank\" rel=\"noreferrer noopener\">Part 3 \u2013 The Belmont Report: Basic Ethical Principles and their Application<\/a><\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.hhs.gov\/ohrp\/regulations-and-policy\/decision-charts\/index.html\" target=\"_blank\">Human Subject Regulations Decision Charts<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/www.hhs.gov\/hipaa\/for-professionals\/faq\/ferpa-and-hipaa\/index.html\">FERPA and HIPAA<\/a><\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.ecfr.gov\/cgi-bin\/text-idx?SID=540680572016723861f29a3c91893e28&amp;mc=true&amp;tpl=\/ecfrbrowse\/Title45\/45tab_02.tpl\" target=\"_blank\">Protection of Human Subjects (Federal Code)<\/a><\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.caida.org\/publications\/papers\/2012\/menlo_report_actual_formatted\/\" target=\"_blank\">The Menlo Report<\/a><\/li>\n<\/ol>\n<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Chapter 7<\/strong>&nbsp;of&nbsp;<em>Medical Apartheid<\/em>&nbsp;by medical ethicist Harriet Washington. This chapter takes a deep dive into the specifics of the Tuskegee Syphilis Study. It also discusses some of the roots of the \u201clazy minority\u201d stereotype.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Option 1: Read through&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/bobcat.library.nyu.edu\/primo-explore\/fulldisplay?docid=nyu_aleph003731015&amp;context=L&amp;vid=NYU&amp;lang=en_US&amp;search_scope=all&amp;adaptor=Local%20Search%20Engine&amp;isFrbr=true&amp;tab=all&amp;query=any,contains,Harriet%20A%20Washington&amp;sortby=date&amp;facet=frbrgroupid,include,651372567&amp;offset=0\" target=\"_blank\">Bobst<\/a>&nbsp;or Course Reserves&nbsp;<\/li>\n\n\n\n<li>Option 2: Listen to&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/drive.google.com\/file\/d\/1urSzcFGHrHEXLj7oL97o_vkGwv5c2ycx\/view?usp=sharing\" target=\"_blank\">Chapter 7.1<\/a>&nbsp;and&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/drive.google.com\/file\/d\/1ClcWQ-uNLwE0eTgqjGHwTVAatddbDmBM\/view?usp=sharing\" target=\"_blank\">7.2<\/a>&nbsp;(chapter ends halfway through the second recording)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Chapter 8<\/strong>&nbsp;of&nbsp;<em>Medical Apartheid<\/em>&nbsp;by medical ethicist Harriet Washington. This chapter takes a deep dive into issues of reproductive control and race.&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Option 1: Read through&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/bobcat.library.nyu.edu\/primo-explore\/fulldisplay?docid=nyu_aleph003731015&amp;context=L&amp;vid=NYU&amp;lang=en_US&amp;search_scope=all&amp;adaptor=Local%20Search%20Engine&amp;isFrbr=true&amp;tab=all&amp;query=any,contains,Harriet%20A%20Washington&amp;sortby=date&amp;facet=frbrgroupid,include,651372567&amp;offset=0\" target=\"_blank\">Bobst<\/a>&nbsp;or Course Reserves&nbsp;<\/li>\n\n\n\n<li>Option 2: Listen to Chapter<a rel=\"noreferrer noopener\" href=\"https:\/\/drive.google.com\/file\/d\/1ClcWQ-uNLwE0eTgqjGHwTVAatddbDmBM\/view?usp=sharing\" target=\"_blank\">&nbsp;8.1<\/a>&nbsp;(chapter starts @ 35:44)&nbsp;and&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/drive.google.com\/file\/d\/1N4M02k_LP3SxBvUpw5m2iNA1e73zcDrN\/view?usp=sharing\" target=\"_blank\">8.2<\/a>(ends around 40 minutes)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Harriet Washington on Democracy Now! (news show):&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.democracynow.org\/2020\/9\/10\/vaccine_trials_black_participants_medical_ethics\" target=\"_blank\">COVID vaccine trials, Part I<\/a>&nbsp;(Part I) &nbsp;<\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.democracynow.org\/2020\/9\/10\/vaccine_trials_developing_world\" target=\"_blank\">Part II of the Democracy Now interview<\/a>&nbsp;on inequities on COVID-related medical topics.&nbsp;<\/li>\n\n\n\n<li>Why do you think Harriet Washington argues that the Tuskegee Syphilis Study is not an appropriate parallel for the current COVID vaccine trials? What does Kaushik Sunder Rajan mean by the term \u201cshell game?\u201d<\/li>\n\n\n\n<li>Democracy Now!:&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/www.democracynow.org\/2020\/9\/22\/dawn_wooten_ice_forced_sterilization\" target=\"_blank\">Whistleblower Nurse in&nbsp;ICE&nbsp;Jail<\/a>\n<ul class=\"wp-block-list\">\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/whistleblower.org\/press-release\/government-accountability-project-and-project-south-send-letter-to-congress-on-behalf-of-whistleblower-client\/\" target=\"_blank\">Letter sent to Congress<\/a><\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.whistleblowers.gov\" target=\"_blank\">Whistleblowers.gov<\/a>, Whistleblower from Chapter 7 of Medical Apartheid<\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"http:\/\/www.lasallecorrections.com\" target=\"_blank\">Private prison: LaSalle Corrections<\/a><\/li>\n\n\n\n<li>Dr. Mahendra Amin, Nurse Eunice Rivers<\/li>\n\n\n\n<li>Companion segment to the ICE Whistleblower piece,&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/www.democracynow.org\/2020\/9\/22\/belly_of_the_beast_documentary\" target=\"_blank\">\u201cBelly of the Beast\u201d: Survivors of Forced Sterilizations in California\u2019s Prisons Fight for Justice<\/a>. Other segments related to this episode are listed in the&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/docs.google.com\/document\/d\/1OCQt0mrzlX1EOWQ1CqntIgMjBiWQNjHb9Q52PFBlRZA\/edit#bookmark=id.93k6m9ma1b0l\" target=\"_blank\">Extra Credit opportunities Google doc<\/a>.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.youtube.com\/watch?v=M6AKIIhoFn4&amp;feature=youtu.be\" target=\"_blank\" rel=\"noreferrer noopener\">HHS.gov\u2019s 1986 video on the Belmont Report<\/a>&nbsp;(YouTube)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.ugapress.org\/index.php\/books\/medical_bondage\"><em>Medical Bondage:&nbsp;Race, Gender, and the Origins of American Gynecology<\/em><\/a>, by&nbsp;Deirdre Cooper Owens (UGA Press)<\/p>\n\n\n\n<ul id=\"block-056a4a1b-2b7e-44f4-ac2f-97492743e555\" class=\"wp-block-list\">\n<li>YouTube &amp; Privacy\n<ul class=\"wp-block-list\">\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/support.google.com\/youtube\/answer\/2801999?hl=en\" target=\"_blank\">Child Safety on YouTube<\/a>&nbsp;(August 2019)<\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/support.google.com\/youtube\/answer\/9383587?hl=en\" target=\"_blank\">Upcoming Changes to kids content on YouTube<\/a>&nbsp;(November 2019,&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/www.theverge.com\/2019\/11\/13\/20963459\/youtube-google-coppa-ftc-fine-settlement-youtubers-new-rules\" target=\"_blank\">enacted January 2020 according to Verge.com<\/a>)<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li>Additional Videos, from TED\n<ul class=\"wp-block-list\">\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.ted.com\/talks\/dorothy_roberts_the_problem_with_race_based_medicine\" target=\"_blank\">The Problem of Race Medicine<\/a><\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.ted.com\/talks\/alyson_mcgregor_why_medicine_often_has_dangerous_side_effects_for_women\" target=\"_blank\">Why Medicine Often Has Dangerous Side Effects For Women<\/a><\/li>\n<\/ul>\n<\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.theguardian.com\/education\/2020\/sep\/28\/oxford-moves-to-protect-students-from-chinas-hong-kong-security-law\" target=\"_blank\">Oxford moves to protect students from China\u2019s Hong Kong security law<\/a>&nbsp;(The Guardian)<\/li>\n\n\n\n<li><a rel=\"noreferrer noopener\" href=\"https:\/\/www.colorlines.com\/articles\/ending-hyde-amendment-would-help-stanch-healthcare-oppression-women-color-op-ed?utm_source=newsletter&amp;utm_medium=email&amp;utm_campaign=10_01_2020&amp;utm_term=Ending%20the%20Hyde%20Amendment%20Would%20Help%20Stanch%20Healthcare%20Oppression%20for%20Women%20of%20Color%20%5BOp-Ed%5D&amp;&amp;utm_content=email&amp;&amp;\" target=\"_blank\">Ending the Hyde Amendment Would Help Stanch Healthcare Oppression for Women of&nbsp;Color [Op-Ed]<\/a>&nbsp;(Colorlines)<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Chapter 7&nbsp;of&nbsp;Medical Apartheid&nbsp;by medical ethicist Harriet Washington. This chapter takes a deep dive into the specifics of the Tuskegee Syphilis Study. It also discusses some of the roots of the \u201clazy minority\u201d stereotype. Chapter 8&nbsp;of&nbsp;Medical Apartheid&nbsp;by medical ethicist Harriet Washington. This chapter takes a deep dive into issues of reproductive control and race.&nbsp; Harriet Washington [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[13,4],"tags":[],"class_list":["post-5924","post","type-post","status-publish","format-standard","hentry","category-diversity","category-nyu"],"_links":{"self":[{"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=\/wp\/v2\/posts\/5924","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=5924"}],"version-history":[{"count":3,"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=\/wp\/v2\/posts\/5924\/revisions"}],"predecessor-version":[{"id":6907,"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=\/wp\/v2\/posts\/5924\/revisions\/6907"}],"wp:attachment":[{"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=5924"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=5924"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/arlduc.org\/senseandscale\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=5924"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}