Genetic Privacy Sadaf Hossain Afshin Humayun “The next major explosion is going to be when genetics and computers come together.” -Alvin Toffler

Timeline of Genetic Advances The term "genetics" was introduced The term "genetic engineering" was first used by Danish microbiologist A. Jost Watson and Crick discover the double- helix structure of DNA The U.S. Supreme Court approved the principle of patenting genetically engineered life forms.

Timeline (cont.) The gene responsible for cystic fibrosis was discovered The Human Genome Project was started The gene for Huntington’s disease was discovered The first breast cancer gene was discovered The Human Genome Project was completed.

Human Genome Project Conducted by NIH It mapped the entire human DNA sequence It discovered that there are 30,000-40,000 human genes &q=human+genom e+project&hl=enhttp://video.google.com/videoplay?docid= &q=human+genom e+project&hl=en

Who Can See Our Genetic Info? Insurance Companies Employers Legal Institutions (Courts and Law Enforcement) Educational Institutions Family Biotechnological Firms

Advantages for Insurance Companies Already establishes premiums based on medical/family history Genetics are just another risk factor More affordable insurance in the long- term Capitalist insurance companies need profit If EVERYONE is insured, they can’t exist

Problems with Insurance Companies use Genetic Testing Formation of a Genetic Underclass –Currently 7% is “medically uninsurable.” –Genetic testing could drastically increase this number. –A man in Iowa was denied both health and life insurance because he had the gene for Huntington's disease. The fear of taking a genetic test

Advantages for Employers Companies spend as much as 39% of their total payroll costs on employee benefits and over 21% of that total goes to medical benefits. Physically-dependent jobs require specific health requirements –Athletes –NASA May save lives –Thomas Herrion (NFL player) died

Problems with Employers using Genetic Testing Employers using genetic testing could cause genetic discrimination based on genetic information. Susceptibility testing 1% of firms conduct sickle cell anemia testing and 0.4% conduct testing for Huntington’s disease. A man was denied employment because he had cystic fibrosis. Racial/Ethnic Discrimination –African-American –Ashkenazi Jews

Discussion Question 1 After obtaining genetic information, a professional sports team learns that their best player has a genetic predisposition to a heart disease. His contract expires at the end of the season, but the team decides not to re-sign him. Should this team use genetic probabilities to determine future contracts? Also, should the player retire due to his possible condition?

Advantages for Legal Institutions In courts, genetic information can serve as background indicators for the accused Jury can decide validity of genetic information Law enforcement officials cannot use genetic information as a “predictive” tool –Genetics NOT necessarily = Behavior

Problems with Legal Institutions Using Genetic Testing Who is in law enforcement genetic databases? –A 13 year old girl who threw a snowball at a police car. National DNA profiles for everyone? Errors with genetic testing –When the FBI Forensic Laboratory ran DNA profiles on 225 FBI agents and then ran the results a second time, one in six of the results did not match up.

Advantages for Educational Institutions May track diseases early –Dyslexia –Mental Retardation –ADHD After diseases are found, child can receive special educational help earlier on

Problems with Educational Institutions using genetic testing IQ tests Diagnostic labeling can affect a child’s self-esteem and relationship to their school. Students can be ostracized by his peers and teachers.

Advantages for Family May help when deciding to have children –If your sister has diabetes, was it genetic, and if so, do you have the gene too? May give family a chance to plan a future around child’s predispositions, so the actual disease does not manifest –Manic Depression is partly genetic and partly environmental

Problems with Family’s using Genetic Testing The parents may treat children differently because of their genetic makeup. Self-esteem of child may be hurt –“Gattaca” May cause emotional pain because child may die young. –Huntington’s patients die by the age of 30.

Advantages for Biotechnological Firms Without privacy concerns, research can be conducted with more “efficiency” They research to save lives in the future –The more genetic information they can get, the more likely they can discover more cures for diseases

Problems with Biotechnological Firms obtaining information Patenting a cell line without informed consent of the individual which the cell is from. –Exploitation of indigenous people: United States Commerce Department takes advantage of Guaymi tribe. Easily accessibility of scientist and physicians to biotechnological companies thereby making exploitation easy. –Conflicts of interest

Discussion Question 2 A man has cancer. He has a surgery done where an organ is removed. The physician receives the man’s informed consent to conduct the surgery. Afterwards the physician sends the man’s organ to a biotechnology firm for research on cancer treatments. However the man doesn’t know about this. Was it right for the physician to send the man’s organ to the biotechnological firm?