Informed consent, genetic complexity & citizen science Dana
Waring Cornerstones of Science Library Partner Summit - December
12, 2014 [email protected] @pgEdorg @dwaringbateman
www.pged.org [email protected]
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Todays agenda Can we use best selling books to engage, educate
and excite people about genetics? Practical, relevant, without
jargon & clear connection back to a persons life, family or
experiences in society The Immortal Life of Henrietta Lacks and The
Sports Gene as a way to tackle informed consent and genetic
complexity. The Patient Will See You Now, out in January 2015
2014: 228,000 genomes at $1000 a piece
http://www.technologyreview.com/news/531091/emtech-illumina-says-228000-human-genomes-will-be-sequenced-this-year/
2006: 1 genome for $5,000,000
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Building the databases between traits (including disease) and
our genes
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How do scientists use cell lines in 2014?
https://catalog.coriell.org/0/Sections/BrowseCatalog/Diseases.aspx?PgId=3
Do scientists still use HeLa cells? 55,000+ publications since
Immortal Life of Henrietta Lacks was published!
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http://www.usatoday.com/story/tech/sciencefair/2013/08/07/henrietta-lacks-nih/2627923/
The Lacks family gets a say with the National Institutes of Health
via a data use committee
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Informed consent: Do you want to know about: Genetic markers
that are strongly linked to conditions that benefit from early
treatments, treatments with a possibility of success? Genetic
markers associated with adult onset diseases, for which successful
treatments exist? Genetic markers associated with adult onset
disease, but lack established successful treatments and
interventions? Genetic markers that *might* be linked to disease
but are not well understood?
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http://rebeccaskloot.com/wp-content/uploads/2011/08/HELA-hist-marker-3.jpg
The Lacks family: pioneers in consent, privacy and research
ethics
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The Sports Gene
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David Epsteins TED Talk
http://www.ted.com/talks/david_epstein_are_athletes_really_getting_faster_better_stronger?language=en
Do Now Answer the following questions: Do you wish your parents
had genetically tested you as a child to see if there is a certain
sport at which you might excel or to see if you might have a
special gift for music? Why or why not? What could be a benefit and
what could be a disadvantage to having genetic analysis of this
sort performed at an early age?
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www.nytimes.com/2008/11/30/sports/30genetics.html What can a
genetic test for sports ability tell us?
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How do genetic testing and athletics intersect? Genetic testing
is being used to predict injury risk and to detect medical
conditions with the aim of preventing harm to athletes Companies
offer testing to help parents and children use genetics as part of
the puzzle in deciding what sport to pursue. The role of genetic
testing in sports presents a number of personal and societal
questions in need of attention.
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CARDIOMYOPATHY SICKLE CELL TRAIT How do we decide to screen for
conditions that may put an athletes health at risk? How common or
risky does a trait need to be before we screen everyone? Source:
American Heart Association
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http://azstarnet.com/gallery/sports/college/wildcats/photos-softball-pitcher-jennie-finch/collection
Why can US Olympian Jennie Finch strike out top Major League
Baseball players with a much slower pitch than they typically
hit?
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Photo: Matt Dunham AP Photo via www.michaelphelps.net Michael
Phelps and Usain Bolt: What has led them to excel?
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Discussion questions: How effective might genetic analysis be
in predicting athletic performance? Should genetic analysis be used
to screen athletes for health conditions? Why or why not? From a
scientific perspective, what are the most important facts when
examining the link between athletic performance and genetics? What
should a family consider when a child is thinking about playing a
contact sport? How can genetic information both illuminate and
complicate how parents decide what is right for their
children?
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http://esl-bits.net/listening/Media/2013-07-24/A.Fathers.Hunt/
Citizen scientists Partners in health