Wednesday, March 13, 2013
Multiculturalism
TED Talk about female circumcision
http://www.ted.com/talks/kakenya_ntaiya_a_girl_who_demanded_school.html?utm_source=email&source=email&utm_medium=social&utm_campaign=ios-share
Medicine & the Arts
"Love Alone," a new play at the Trinity Rep in Providence, R.I., breaks the mold of the medical melodrama in its portrayal of the consequences of a devastating medical mistake. http://nyti.ms/KiMqPJ
Genetics
*new* 9April13 Elizabeth Blackburn molecular biologist worked on teleomeres, has new medical test
http://www.nytimes.com/2013/04/09/science/elizabeth-blackburn-molecular-biologist-charts-her-own-course.html?nl=todaysheadlines&emc=edit_th_20130409&_r=0
1April13 Genetics & Cancer (story in al-Jazeera)
http://m.aljazeera.com/story/201332814458981700
1April13 Gene Therapy for sight, smell, hearing, etc.
http://www.the-scientist.com/?articles.view/articleNo/34778/title/Sensing-Gene-Therapy/
20Mar13 Genetic Therapy Show Promise for Acute Leukemia
http://www.nytimes.com/2013/03/21/health/altered-t-cell-therapy-shows-promise-for-acute-leukemia.html?_r=0&hp=&adxnnl=1&adxnnlx=1363814668-O+Rsx6N6JC3dOyYLSzE44Q
13Mar13 NOVA's Cracking Your Genetic Code (video we watched in class)
http://video.pbs.org/video/2215641935/
Hemophilia B is the first well-known disease to appear treatable by gene therapy, a technique with a 20-year record of almost unbroken failure. http://nyti.ms/uI3yx7
Knome’s New Machine to Aid Labs in Genomic Analysis - NYTimes.com
http://www.nytimes.com/2013/02/03/business/knomes-new-machine-to-aid-labs-in-genomic-analysis.html?nl=todaysheadlines&emc=edit_th_20130203
Human Genome Project story
http://www.pbs.org/wgbh/nova/body/cracking-the-code-of-life.html
http://www.nytimes.com/2013/04/09/science/elizabeth-blackburn-molecular-biologist-charts-her-own-course.html?nl=todaysheadlines&emc=edit_th_20130409&_r=0
1April13 Genetics & Cancer (story in al-Jazeera)
http://m.aljazeera.com/story/201332814458981700
1April13 Gene Therapy for sight, smell, hearing, etc.
http://www.the-scientist.com/?articles.view/articleNo/34778/title/Sensing-Gene-Therapy/
20Mar13 Genetic Therapy Show Promise for Acute Leukemia
http://www.nytimes.com/2013/03/21/health/altered-t-cell-therapy-shows-promise-for-acute-leukemia.html?_r=0&hp=&adxnnl=1&adxnnlx=1363814668-O+Rsx6N6JC3dOyYLSzE44Q
13Mar13 NOVA's Cracking Your Genetic Code (video we watched in class)
http://video.pbs.org/video/2215641935/
13Mar13 How Well Do You Want to Know Your DNA? | PBS NewsHour
Coincidentally to showing NOVA's "Cracking Your Genetic Code" on 12March, was a story on tonight's NewsHour also about genetics &
personal medicine.
http://www.pbs.org/newshour/rundown/2013/03/if-your-genes-revealed-you-were-likely-to-get-a-disease-would-you-want-to-know.html
http://www.pbs.org/newshour/rundown/2013/03/if-your-genes-revealed-you-were-likely-to-get-a-disease-would-you-want-to-know.html
Hemophilia B is the first well-known disease to appear treatable by gene therapy, a technique with a 20-year record of almost unbroken failure. http://nyti.ms/uI3yx7
Knome’s New Machine to Aid Labs in Genomic Analysis - NYTimes.com
http://www.nytimes.com/2013/02/03/business/knomes-new-machine-to-aid-labs-in-genomic-analysis.html?nl=todaysheadlines&emc=edit_th_20130203
Human Genome Project story
http://www.pbs.org/wgbh/nova/body/cracking-the-code-of-life.html
History
Compensation for Forced Sterilizations
http://www.nytimes.com/2011/12/10/us/redress-weighed-for-forced-sterilizations-in-north-carolina.html?pagewanted=3&_r=1&nl=todaysheadlines&emc=tha23
Sunday, March 10, 2013
*new 21Apr13* International Research Ethics (+ Paper 3)
21Apr13 NYTimes: In the Basement of a School Known for Science, a Holocaust Museum
http://nyti.ms/15nHkOR
The Bronx High School of Science spent more than a dozen years and $1 million on a Holocaust museum and studies center. “Great scientists have to be ethical people,” said the school’s principal.
11Apr13 Feds Fault Preemie Researchers For Ethical Lapses
http://m.npr.org/news/front/176811809
13Mar13 NYTimes: African Trial of H.I.V. Drugs Fails
The failure was not due to the methods — two different pills and a vaginal gel — but to the fact that the women did not use them consistently.
http://nyti.ms/ZbxRSZ
Discussion questions (from case I scanned and emailed you on Sun 10 March):
1. What are Ellen's responsibilities to Sebena, to Tefera, to her adviser and to the research study?
2. How could the informed consent form or the process of obtaining informed consent be modified to address Ellen's concerns? Consider issues such as different cultural meanings of disease, the need for background knowledge about science, medicine and research study design, and the length and depth of the information provided?
3. Ellen notices that Sebena appears intimidated through the informed consent process. Moreover, the research study has provided the funds to build the new medical care facility in this resource-poo area. Does the evident inequality in power between the researchers and the participants have an ethical impact on the informed consent process?
4. What are the ethical implications of providing a U.S. standard of medical care through a research study in a society that cannot support the cost of such care outside a foreign-sponsored research protocol?
5. What ethical issues are raised in obtaining individual informed consent in a culture where family and/or community consent is also warranted, and, as in this situation, obtained in the form of an agreement between the researchers and the community elders?
http://nyti.ms/15nHkOR
The Bronx High School of Science spent more than a dozen years and $1 million on a Holocaust museum and studies center. “Great scientists have to be ethical people,” said the school’s principal.
11Apr13 Feds Fault Preemie Researchers For Ethical Lapses
http://m.npr.org/news/front/17681180913Mar13 NYTimes: African Trial of H.I.V. Drugs Fails
The failure was not due to the methods — two different pills and a vaginal gel — but to the fact that the women did not use them consistently.
http://nyti.ms/ZbxRSZ
Discussion questions (from case I scanned and emailed you on Sun 10 March):
1. What are Ellen's responsibilities to Sebena, to Tefera, to her adviser and to the research study?
2. How could the informed consent form or the process of obtaining informed consent be modified to address Ellen's concerns? Consider issues such as different cultural meanings of disease, the need for background knowledge about science, medicine and research study design, and the length and depth of the information provided?
3. Ellen notices that Sebena appears intimidated through the informed consent process. Moreover, the research study has provided the funds to build the new medical care facility in this resource-poo area. Does the evident inequality in power between the researchers and the participants have an ethical impact on the informed consent process?
4. What are the ethical implications of providing a U.S. standard of medical care through a research study in a society that cannot support the cost of such care outside a foreign-sponsored research protocol?
5. What ethical issues are raised in obtaining individual informed consent in a culture where family and/or community consent is also warranted, and, as in this situation, obtained in the form of an agreement between the researchers and the community elders?
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