personal genetics education project

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					19th century

20th century

(Flemming, 1882)

Where is genetics headed?

21st century

Genome sequencing: Past, Present, Future

• Human Genome Project: 13 years, $2.7 billion
• Nobel Laureate James Watson: 2 years, $2 million

• DecodeMe, 23andMe, Navigenics: A “genome scan”
(SNP analysis, $1,000-$3,000, results in a few weeks) • Personal genome sequence: A Human Genome Project performed on YOU: Goal: personal genomes for under $1000 in the next 1-5 years
personal genetics education project

What is a personal genome sequence?

• An analysis of all your genes • A record of the mutations and differences in your genome • As if all current and future genetic tests were performed simultaneously • A Human Genome Project performed on YOU.

personal genetics education project

Why would you do this?
• To gain ideas for more tests and interventions • To take medicines tailored to your body • To change your habits • To know as much as you can about your health and genetic makeup • To make long term medical and financial plans • To be thought of as an early adopter or “information altruist” • To inform reproductive decisions
personal genetics education project

Personal genomes: what are the challenges?
•What are the privacy concerns for individuals and families? •How much should we fear discrimination at work and with insurance? •How far ahead is the technology of its clinical usefulness? •Will fair weight be given to environmental & social factors? •How can we ensure access for all who want to be sequenced? •What surprises and secrets might be revealed? •How realistic are promises of anonymity?
personal genetics education project

Psychological questions in genetic testing

How do individuals feel and act when they learn about their genetic risk for: Breast, ovarian and colon cancer? Alzheimer’s Disease? Huntington’s Disease?

personal genetics education project

Psychological impact of genetic testing: What do we know?

•Breast, Ovarian and Colon Cancer: Overall testing had “no impact” on general and specific distress, anxiety or depression in carriers and non-carriers

•Some cases showed a short term (4 months or less) increase in stress among carriers.
•Breast cancer mutation carriers increased their screening behaviors more often than did ovarian and colon mutation carriers.

•Psychological response was likely tied to general outlook and mental state before testing
Other considerations: • People may not fully understand the results and concept of “risk” • Those who seek out and enroll in genetic testing studies may be a self- selected group that is more prepared for the results than is the average person.

Findings from “ A systemic review of perceived risks, psychological and behavioral impacts of genetic testing” Heshka et al, Vol. 10 No. 1 Jan. 2008

personal genetics education project

Psychological and behavioral impact of genetic testing: Alzheimer’s Disease

• Why would people want to know? Organize personal affairs, hope for treatment, arrange long-term care, prepare family, stop procrastinating, and experience relief if found to be a noncarrier.

• What actions are taken as a result of a positive test? 17% of people who learned the carry a mutation that increases their risk of AD changed their long-term care insurance (only 2% of the negative group and 4% of control group did the same).
53% changed at least one health-related behavior to reduce their risk (24% of negative group reported a change, 31% of control group did the same)

• What is the psychological impact? No significant long term psychological differences were found in the post-test results, regardless of the results.
From “ Genetic Risk Assessment for Adult Children of People with Alzheimer’s Disease: The Risk Evaluation and Education for Alzheimer’s Disease (REVEAL) Study” , JS Roberts et al, 2005.

personal genetics education project

Psychological impact of genetic testing: Huntington’s Disease • Why would people want to know? To be certain, to plan for the future, and to inform children

• Only between 9-20% of at risk people chose to be tested. Those who declined testing cited fear of searching for symptoms and loss of hope as main reasons. Also mentioned increased risk to children if found to be a carrier, absence of a cure, loss of health insurance
• Carriers and non-carriers differ in the short term most noticeably: Carriers report higher psychological distress and feelings of hopelessness in the first weeks and months after testing. There was no significant difference in long-term psychological impact. • Psychological state before the testing was the best indicator of how individuals would respond to learning their carrier or non-carrier status.
•From “ Psychological impact of genetic testing for Huntington’s disease: an update of the literature”, Meiser and Dunn, 2000.

personal genetics education project

What are the big questions?

• How will people respond to what might be “out of the blue” information?

• Will knowing about certain risks or traits change how we think of ourselves, our histories and our futures?

• What actions, if any, will people take once they learn their genomes?

personal genetics education project

What would the debate in your family look like?
Early adopter sister


Skeptical brother

Mom already signed up to get sequenced

Dad the worrier

Crazy Uncle Bill Grandpa says no way!

Aunt Erma worried about losing her insurance because of her son’s DNA sequence Grandma is gone, but a sample of her DNA still exists…

Uncle Fred wants to donate his sequence to science and make it totally public

personal genetics education project