Health and Genetics Engineering & Public Policy Rebecca - - PowerPoint PPT Presentation

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Health and Genetics Engineering & Public Policy Rebecca - - PowerPoint PPT Presentation

Oct 07, 2023 206 likes •397 views

CyLab Health and Genetics Engineering & Public Policy Rebecca Balebako y & c S a e v c i u r P r Advisor: Dr. Lorrie Cranor i t e y l b L a a s b U o b r a a t L o y r C y U H D T T E P . U :

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C y L a b U s a b l e P r i v a c y & S e c u r i t y L a b

  • r

a t

  • r

y H T T P : / / C U P S . C S . C M U . E D U

Engineering & Public Policy

CyLab

Health and Genetics

Rebecca Balebako Advisor: Dr. Lorrie Cranor

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Agenda

  • Quiz
  • Schedule change
  • Homework
  • Intro to genetic privacy
  • GINA: Employment Discrimination
  • DNA Testing for Consumers
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Schedule

  • Guest Lecturer November 25th on Drones

– The readings will stay the same but the lectures switched.

  • Today’s lecture – Genetic Privacy
  • Reminder: November 20 – Draft project paper due
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Homework Questions

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How much do you already know about genomics?

  • What is a genome?
  • http://www.pbs.org/wgbh/nova/body/public-

genomes.html

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Genetic diversity

Our genomes are over 99% identical. Remaining <1% difference => GENETIC VARIATION

VARIANTS MUTATIONS

Terminology: How do we talk about our genetic differences?

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Complex relationship between your DNA and environment

Environment and Social Factors

http://www.flickr.com/photos/barl0w/3036412907 http://www.flickr.com/photos/wellcomeimages/5814818738/sizes/l/in/photostream/

Examples: PKU (phenylketonuria): A genetic disease with an environmental cure (diet). Inherited cancer susceptibility: Women with same BRCA1 variant differ in whether they develop cancer, type of cancer and age

  • f onset.

Type 2 Diabetes: Common disease with environmental and genetic contributions.

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DNA Testing for Consumers

  • DTC testing does not produce full genome

sequence (unlike Human Genome Project)

  • Can report on

– Ability to taste bitter flavors – Photic sneeze reflex – Risk for developing heart disease – Diabetes

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23andme

  • Sells genetic profiles on-line: $99
  • Previously offered

– health reports – chances of getting dozens of diseases – likely response to various drugs

  • FDA said need to be approved as ‘medical device’
  • Main business model ‘create a massive database’ so

pharmaceutical and academic researchers can do trials more cheaply

Robert Hof “Seven Months After FDA Slapdown, 23andMe Returns With New Health Report Submission” Forbes.com 6/20/2014

http://www.forbes.com/sites/roberthof/2014/06/20/seven-months-after-fda-slapdown-23andme- returns-with-new-health-report-submission/

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Drug response

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Genetic Information Nondiscrimination Act (GINA)

  • Signed into law 2008
  • Protect people to encourage them to participate in

DNA testing and research

  • Employers can not use genetic info for hiring or

promotion decisions

  • Insurers can not use it to make decisions to add
  • r drop people from policies
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Class Discussion Choice

  • GINA: Employment discrimination
  • Personal Kits debate
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GINA: Group Discussions

  • You will be in an ‘expert’ and ‘home’ group.
  • Each expert group will receive information on a

case, which you will discuss.

  • Then return to your home group and summarize

what you learned.

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GINA: Expert group questions

  • How did the company use or try to use genetic

information about its employees or job applicants?

  • Was a person fired or not hired because of a

genetic test or medical condition?

  • Was there a lawsuit? If so, what was the result?

Was an employee rehired, was there a settlement, etc.?

  • Do you agree with how the case you studied was

resolved? Why or why not?

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DTC: Congressional Hearing

Characters who support direct-to-consumer (DTC) genetic testing (Panel A):

  • Doctor A - Believes DTC testing is beneficial
  • Patient A – Wants access to DTC genetic testing
  • Founder of a DTC company
  • Senator A – Leaning toward supporting DTC testing; questions witnesses

Characters who are against or doubtful of DTC genetic testing (Panel B):

  • Doctor B - Thinks genetic testing through a doctor is valuable, but is skeptical
  • f DTC testing
  • Patient B – Against DTC genetic testing
  • Senator B – Is skeptical of DTC tests; questions witnesses
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DTC: Schedule

  • 10 minutes: Work with your group to research or

develop the position of your character

  • Select one person to represent your group and

make a quick statement (3-5 sentences)

  • Senators will take turns ask questions
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Genetics

  • http://video.pbs.org/video/2215641935/
  • www.pbs.org/nova/body/tanzi-genetic-tests.html

www.pbs.org/nova/body/public-genomes.html