Documenti di Didattica
Documenti di Professioni
Documenti di Cultura
CONSUMERS Reads
2014-15
DECEMBER 3, 2014
RICHARD ROCCO, PHD
MARJORIE HAMMER, MSN, FNP
AGENDA
Autonomy
Non Maleficence
Beneficence
Justice
HISTORICAL BACKGROUND:
1947 NUREMBERG TRIBUNAL
S k l o o t , R . ( 2 0 1 0 ) . I m m o r t a l C e l l s o f H e n r i et t a L a c k s , C h a p . 1 7
TUSKEGEE STUDY:
PHOTO BY U.S. PUBLIC HEALTH SERVICE
HISTORICAL BACKGROUND:
1930-70 TUSKEGEE SYPHILIS STUDY
Tuskegee Syphilis Study re: natural history of syphilis
Tuskegee Institute & US Public Health Service
Study was proposed to last 6 months; lasted 40 years
399 African American men infected w syphilis; 200 not infected (most
AA’s did not have health insurance @ that time)
Provided free health exams, food & transportation
Investigated the course of untreated syphilis
Is the natural history of syphilis different in AA?
None who had syphilis were told they had it
None who had syphilis were given sufficient treatment
They were told they were being treated for “bad blood”.
1933 Spinal taps to diagnose neurological syphilis
1943: Public Health Service treats patients w syphilis w
penicillin; Tuskegee patients NOT treated.
TUSKEGEE
T h e s t u d y i t s e l f by d e s i g n p u r p o s e l y r e c r u i te d o r a l l o we d t h e p a r t i c i p a n t s to c o n t i n u e
to b e e xp o s e d to toxi n s w i t h o u t p r o vi d i n g a m e a n s f o r t h e m to s e e k c a r e to r e ve r s e t h e
damages.
I n c o n c l u s i o n , A B Ps i a g r e e s w i t h Ju d g e C a t h e l l o f t h e C o u r t o f A p p e a l s o f M a r y l a n d ,
t h a t t h i s w a s a n a t r o c i o u s a c t a g a i n s t t h e A f r i ca n A m e r i c a n p a r t i c i p a n t s o f t h i s s t u d y.
T h e v e r y r i g h t to p re s e r v e a n d p r o te c t o n e ’ s o w n l i f e a n d h e a l t h w a s c o m p r o m i s e d
a g a i n s t t h e w i l l a n d k n o wl e d g e o f t h e p a r t i c i p a n t s o f t h i s e x p e r i m e n t , w h i c h i s n o t j u s t
a crime against American citizens, but in a much greater sense according to the
N u r e m b e r g C o d e , a c r i m e a g a i n s t H u m a n i t y.
From Do No Harm: Association of Black Psychologists’ Commentary on Kennedy Krieger’s R & M Research Study
h t t p : / / w w w . a b p s i . o r g / p d f / 2 0 1 1 t h e r m s t u d y . p d f
HISTORICAL BACKGROUND:
HELA & GENE MAPPING
1 9 9 6 H I P P A : H e a l t h I n s u r a n c e P o r t a b i l i t y a n d A c c e s s i b i l i t y A c t : i l l e g al to
m ak e pe r s o n al m e di ca l i n fo p ub l i c
19 99 R AN D Co r p o r at i o n r e p o r t : > 3 0 7 m i l l i o n t i s s u e s am p l e s s t o r e d i n U . S . ; t h e
m aj o r i t y w i t h o ut pa t i e n t c o n s e n t .
20 05 N at i v e A m e r i ca n H av a s up ai t r i b e m e m b e r s s u e Un i v e r s i t y o f A r i zo n a f o r us e
o f t i s s ue s do n at e d f or di ab e t e s r e s e ar ch t o r e s e ar c h r e : s c h i zo p h r e n i a &
i n br e e di n g.
20 06 N I H r e s e ar c h e r ch ar g e d w s e l l i n g t h o us an d s o f t i s s ue s am p l e s t o
ph ar m a ce ut i cal c o m pa n i e s fo r $ 0 . 5 m i l l i o n
2 0 0 8 G e n e t i c I n f o r m a t i o n N o n D i s c r i m i n a t i o n A c t
20 09 N I H f or m s fe t a l bl o o d b an k ( $ 1 3 m i l l i o n ) . Fam i l i e s s ue as f e t al t i s s ue s
t ake n w i t h o ut i n fo r m e d c o n s e n t & c an b e t r ac e d t o t h e i n fa n t .
2 0 1 3 H u m a n G e n o m e M a p
https://prezi.com/skbmxfnepwav/helahenrietta-lacks-medical-and-science-timeline/
http://rebeccaskloot.com/wp-content/uploads/2011/03/HenriettaLacks_RGG_timeline.pdf
HISTORICAL BACKGROUND:
EBOLA
Ebola Drug Testing Sparks Ethical Debate
-Headline, Des Moines Register , November 2014
http://www.desmoinesregister.com/story/money/business/2014/11/15/ebola-drug-te
sting-sparks-ethics-debate/19110865/
TODAY: THE 4 PRINCIPLES
DISCUSSION
Autonomy
Non-maleficence
Beneficence
Justice