Ethical Stuff in Bioinformatics

signtruculentBiotechnology

Oct 2, 2013 (4 years and 1 month ago)

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ETHICAL STUFF IN
BIOINFORMATICS

D. Micah Hester, PhD

Assoc. Prof. of Medical Humanities/Pediatrics, UAMS/ACH

Ethical Stuff to Discuss Today


DNA


Newborn Screening


Biobanking

DNA


What is DNA?


Double
-
helix molecule w/sugar bases


Genes are expressive DNA


Approx. 20
-
25,000 expressive genes in the
human genome


Why should we care?


Genes have
predispositional

power


Human DNA is unique to each individual


At least, it is uniquely expressed in each
individual


A
-
T; G
-
C…and beyond


Bases lead to…


Amino Acids which lead to…


Proteins which lead to…


Somatic structures which lead to…


Us

So, Are We Our DNA?

Nobel laureate James Watson said: “Now we know, in
large measure, our fate is in our genes.” And Gilbert
(1992) observed that, because our sequenced genome
can be contained in a CD, we may take the latter out of
our pocket and claim: “Here is a human being: this is
me!”


--
Boniolo

and
Vezzoni

2006, 77
-
8

Newborn Screening


What is newborn screening?


Blood spot testing for 30+ known genetic
disorders


Why should we care?


What, if anything, is consented to when screened?


Each child born in the state has DNA on file


Genetic material contained in blood


Valuable personal and public health information
and research can be done with such a large
volume of genetic material

It Is the “Republic” of Texas, after all


Texas Civil Rights Project filed suit over the retention
and use of newborn blood samples


Claimed that the state gave no meritorious reasons for
retaining the spots


a vague sense of what “research” was being done


No clear explanation of what good the research was to the
state


Claimed lack of informed consent for further use


Claimed a high risk for violation of privacy


Court ruled that 5+ million samples had to be
destroyed

Biobanking


What is
biobanking
?


Long
-
term storage of tissue and other human material


>300 million specimens already in storage


Why should we care?


How do we obtain the material?


How do we secure the material?


How do we keep track of the material?


What will be done with the material?


Who owns the material and any resulting findings?

Havasupai & Extended Research


Arizona Native American Tribe of about
650 persons


Arizona State and U of Arizona
researchers took blood samples


Used for diabetes research


Later used for research on schizophrenia
and inbreeding


Tribe sued; ASU settled


Argued that tribe members were not
adequately informed


Implied that donors have a controlling
interest over their samples

Henrietta Lacks


Ms. Lacks (1951) had, and died of, cervical
cancer


Tissue from her cancer was given to a
researcher who was looking for cells that
would last indefinitely


HeLa

cells were just such cells


Vaccines and other discoveries have
followed from the 60
-
year use of
HeLa

cells in research


Ms. Lacks did not consent to the cells being
taken; family was unaware of their
existence and use until the 1970s/80s