Genetics & Privacy By Karen Gately, Bill Lupin, Laura Kim and Maria Bagdasarian

What Does Genetics and Privacy Mean? DNA testing, results can show medical issues. As technology grows, it becomes more and more advanced. Genetics has limitless potential to increase the breadth of knowledge. find the foundation of our existence. find the foundation of our existence.

Ethical Questions Arise… …From the use and availability of our genetic information. -Who gets to know what? -Are certain genetic indicators enough to judge job applicants? -Should genetic testing be required?

EUGENICS… Definition: a social philosophy which advocates the improvement of the human race through favoring positive traits The idea that humans are perfectible or that one group is superior to another Reproductive discrimination Extreme example: Hitler’s Nazi regime

Idiocracy

Privacy and Confidentiality Can genetic information ever really be secure? DNA is the ultimate fingerprint DNA is the ultimate fingerprint Unauthorized disclosure: violations of privacy can cause personal distress and other adverse consequences Unauthorized disclosure: violations of privacy can cause personal distress and other adverse consequences Job loss Discrimination Accessibility issues Accessibility issues

Human Rights and Discrimination  Genetic Discrimination Third parties such as employers, health insurers, and government agencies Third parties such as employers, health insurers, and government agencies  Generates new inequalities  New ways to judge people and create personal anguish For example….. For example…..

Legislation Need for federal genetic privacy laws Lack of consistency in state laws Only 23 states have laws against genetic discrimination by insures, and 11 by employers Only 23 states have laws against genetic discrimination by insures, and 11 by employers Individuals should have ultimate control over how their genetic data is used

FOR INFO PURPOSES ONLY! Genetic testing is for informational purposes, and is not meant to instill any paranoia in you. The theme should be that “a well-informed consumer is a wise consumer.” Companies do y-DNA chromosome testing which involves only non-coding regions of the y- chromosome. Therefore, there are NO possibilities of discovering genetic diseases!

DNA separate from Identity  Specimens are numbered  Number corresponds to a name  Only actual tester has sample with a number on it, never a name  Very few people would actually know who the customer is and what the results are

DNA Results… Protecting the Consumer DNA results can show medical diseases. However, the U.S. Senate endorsed safeguarding individual genetic privacy by passing the Genetic Information Nondiscrimination Act of *This prohibits employees, employment agencies, and labor organizations from using individual genetic information in hiring, firing, and training decisions!

Protecting the Reseacher: Ensuring Confidentiality Particularly important when subject selection is made because of certain sensitive or illegal characteristic Certificates of Confidentiality issued by National Institutes of Health to protect the privacy of research subjects by protecting investigators and institutions from being compelled to release information that can be used to identify subjects in research project, regardless of the source of funding

For the Larger Good Genetic testing is not meant to cause distress, but rather prevent distress of potentially larger magnitude Again, intention and purpose of genetic research is prediction and/or early detection of disease, as well as prevention Allows both consumer and employee to see results in potential problems; best interest for both parties

DNA testing may be able to save insurance costs by putting people with certain predispositions to disease in a separate category Might be helpful to people working with someone that has a predisposition to a metal illness

The Big Picture It is important for measures to be taken to ensure privacy and eliminate sources of discrimination, however these concerns regarding the publicity and use of info are not significant enough to eliminate genetic testing Laws and regulations have been and continue to be implemented to ensure privacy of genetic info, and overall the benefits of research, which in the grand scheme of life is meant to help humans improve their health and lifestyle, are beneficial to our society despite these risks

Presenting 2025 Edition