fetaldex.org

updates

 

Dec. 6, 2010: Significant content increase to fetaldex.org, including “issues” pages, Frequently Asked Questions, and FOIA documents


Nov. 14, 2010: Alice Dreger presents at Chicago Humanities Festival on prenatal dexamethasone and “clitoral sensory testing” on young girls whose clitorises have been shorted for social reasons


Oct. 24, 2010: Ellen Feder and Alice Dreger present news update at the American Society for Bioethics + Humanities; Feder on “clitoral sensory testing” on young girls whose clitorises have been shorted for social reasons; Dreger on prenatal dexamethasone


Oct. 15, 2010: “Task force recommends against prenatal treatment of congenital adrenal hyperplasia”


Oct. 6, 2010: Alice Dreger presents on prenatal dexamethasone and “clitoral sensory testing” as the Brownlee Lecture in Sexuality Studies, Alice Paul Center for Research on Women, Gender, and Sexuality, University of Pennsylvania; co-sponsored by the Center for Bioethics and the Department of History and Sociology of Science


Oct. 4, 2010: Ellen Feder, Anne Tamar-Mattis, and Janet Green present at a Cornell University panel on “clitoral sensory testing” performed on little girls at Weill-Cornell


Sept. 3, 2010: We ask for clarifications from OHRP and FDA. See also commentary from AIC.


Sept. 2, 2010: Responses from FDA and OHRP.


Sept., 2010: AJOB publishes “target article” on prenatal dex; fails to mention that the lead author works for Weill-Cornell; response from Dreger, Feder, and Hildemann here; response from AIC Director here; response from Janet Green (who has CAH) here.


July 31, 2010: Alice Dreger presents keynote to the annual meeting of the Androgen Insensitivity Syndrome Support Group in Nashville; discusses prenatal dexamethasone and “clitoral sensory testing” on young girls whose clitorises have been shorted for social reasons


July 7, 2010: The Gay and Lesbian Medical Association (GLMA) and the National Center for Lesbian Rights (NCLR) issue a joint statement “urging investigation of alleged misuse of prenatal drug to manipulate sexual orientation.”


July 2, 2010: Newsweek covers controversy over prenatal dex for CAH


July 2, 2010: Los Angeles Times health blog on controversy over prenatal dex for CAH


June 29, 2010: Bioethics Forum publishes “Preventing Homosexuality (and Uppity Women) in the Womb?”, by Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis


June 28, 2010: Nature Medicine blog, “Clitoroplasty and Dex Studies Scrutinized by Bioethicists”


June 27, 2010: Advocates for Informed Choice publishes Statement about Recent Controversy About Genital Surgery and Dexamethasone


June 21, 2010: Endo Daily publicizes new draft clinical practice guidelines for the treatment of CAH, clarifying that prenatal dexamethasone for CAH is experimental


June 19, 2010: Time magazine reports mothers not appropriately informed before being administered prenatal dex for CAH; covers our calls for investigations


June 16, 2010: Bioethics Forum publishes “Bad Vibrations” by Alice Dreger and Ellen K. Feder


June 1, 2010: Endocrine Today publishes “Research Into Outcomes of Treatment for Children with Differences in Sex Development Demands Caution,” by Anne Tamar-Mattis


April 24, 2010: “First Weill Cornell CAH Conference” (cosponsored with the CARES Foundation): Janet Green (former CARES Board member) raises questions regarding claims about prenatal dex and the use of “clitoral vibratory testing” on girls


March 3, 2010: The federal Office for Human Research Protections responds, indicating they are investigating our concerns.


March 3, 2010: The Endocrine Society responds to our letter indicating they will not take action because they apparently don’t see the matter as their responsibility.


March 1, 2010: Endocrine Today publishes “Giving Pediatric Patients a Voice in Treatment of DSD,” by Anne Tamar-Mattis


Feb. 25, 2010: The Lawson Wilkins Pediatric Endocrine Society responds to our letter and seems to miss the point of our contacting them.


Feb. 23, 2010: The CARES Foundation answers our letter saying their board will discuss our concerns.


Feb. 22, 2010: Drs. Dreger and Feder send a letter to the CARES Foundation.


Feb. 22, 2010, Drs. Feder and Dreger send a letter to The Endocrine Society.


Feb. 22, 2010, Drs. Feder and Dreger send a letter to the Lawson Wilkins Pediatric Endocrine Society.


Feb. 22, 2010, Drs. Feder and Dreger send a letter to the Vice President of Research of Columbia University regarding the work on the prenatal dex population by Dr. Heino Meyer-Bahlburg.


Feb. 22, 2010, Drs. Feder and Dreger send follow-up letters to the FDA Office of Pediatric Therapeutics, Cornell-Weill Medical School, Mount Sinai School of Medicine, Florida International University, and the Office for Human Research Protections. Click here to read that.


Feb. 11, 2010: Eleven adult advocates who were themselves born with mixed markers of sex send their own letters of concern to the FDA, OHRP, Weill-Cornell, Mount Sinai, and Florida International.


Feb. 10, 2010: Advocates for Informed Choice submits their own letters of concern to the FDA, OHRP, Weill-Cornell, Mount Sinai, and Florida International University.


Feb. 8-9, 2010: We advise the CARES Foundation of our findings so far.


Feb. 8, 2010: The FDA confirms they are looking into our concerns.


Feb. 8, 2010: Bioethics Forum publishes post on fetal dex from Hilde Lindemann, Ellen Feder, and Alice Dreger.


Feb. 7, 2010: Florida International University confirms they are looking into our concerns.


Feb. 3, 2010: Advocates for Informed Choice issues a statement on the legal and ethical issues surrounding this use of fetal dexamethasone.


Feb. 3, 2010: Florida International University indicates they are looking into our concerns.


Feb. 2, 2010: Formal letters of concern are sent from 32 professional researchers in Bioethics and allied fields to the FDA, the OHRP, Weill-Cornell, Mount Sinai, and Florida International University


Jan. 31, 2010: New York Times reports on the FDA cracking down on doctors’ pitches for non-FDA-approved uses of drugs (like this in the case of fetal dex for CAH?)


Jan. 29, 2010: Janet Green, a mother with CAH, speaks out about her concerns about what’s happening to some pregnant women suspected of carrying a girl with CAH