“Privacy relatives, which in turn would breach confidentiality. A

“Privacy is not something I’m merely entitled to, it’s an absolute prerequisite,” noted Marlon Brando. Unfortunately, genetic testing companies do not value privacy to this extent. People would send their DNA samples to genetic companies whether they want to see their family line or check to see if they are at risk for a particular disease. The genetic company’s behavior is rarely monitored, and they have varying privacy policies. And that’s why more laws should be implemented to prevent the loss of privacy and security for people who submit their DNA to these genetic testing websites. Although it may seem harmless to send over a simple swab cheek test to a genetic testing company, there is more than what meets the eye. The genetic test sample can be stored within a DNA database or familial linkage studies if there is any need for further use. “It reveals not only potential disease or other risks to the patient, but also information about potential risks to the person’s children and blood relatives”(Social, Legal, and Ethical Implications of Genetic Testing, Institute of Medicine). So this puts the patient at risk for their information to be revealed to a third party, such as the patient’s relatives, which in turn would breach confidentiality. A genetic testing company such as 23andMe may argue that the patient’s information will only be disclosed to the relatives without the patient’s consent only if it will help the family member to Samira 2avoid harm. However, a study by Wertz and Fletcher revealed that approximately the same number of geneticists would disclosed the information when the disorder is treatable as when it would not be treatable. The family cannot avoid harm to a disease that is not treatable, therefore disclosing the patient’s information would not be beneficial. As stated in Wertz and Fletcher’s study, “53 percent would contact a relative about the risk of Huntington disease; 54 percent about the risk of hemophilia A”(Social, Legal, and Ethical Implications of Genetic Testing, Institute of Medicine). This quote unveiled there is a high risk for a patient’s privacy and security to be violated because geneticists are not educated enough to realize the proper time to disclose a patient’s information without their consent. All of this goes to prove how more laws should be put into place to prevent the breach of confidentiality.         This has been the case with Henrietta Lacks. Henrietta Lacks was a patient at John Hopkins Hospital, where she was diagnosed with cervical cancer. Henrietta Lacks cancer cells were considered to be “immortal”, since they had the ability to survive and divide for an infinite amount of time- they were nicknamed “HeLa” cells. Many scientists became fascinated with the HeLa cells and they began conducting research on the cells. However, during this process of discovery, there was an extreme violation of privacy and security. “Tissue samples were taken during her diagnosis and treatment, and portions were passed along to a researcher without her knowledge or permission…”(Lessons from HeLa Cells: The Ethics and Policy of Biospecimens, Laura M. Beskow). This piece of evidence reveals the lack of privacy and security that exists within these genetic testing companies because if there was privacy and security, Henrietta Lacks would have been aware and given consent for her tissue samples to be passed along to the Samira 3researcher. Based on this information, one can conclude that in order to eliminate the breach of confidentiality that exists within these genetic testing companies, more laws should be implemented in regards to the genetic testing companies.   AncestryDNA may argue that they anonymize the DNA, therefore the person’s information remains secure, private, and intact. Although anonymizing the DNA would be the information secure and intact however it has been proven that companies do not truly anonymize DNA. “…researchers have found that comparing anonymous DNA databases with public records could reveal the names and addresses of the people behind the gene sequences…”(Could Genetic Testing Companies Violate Your Privacy?, Stephanie Pappas). This quote proves how our privacy and security are being violated when we are submitting our genetic information to the at-home DNA testing companies because if we had privacy and security, researchers would not have been able to reveal the names and addresses of the people who have submitted their DNA samples. By not truly anonymizing the DNA, a greater issue has arised, in regards to the patient’s privacy. Not only is the patient’s DNA not anonymized, but researchers are permitted by law to conduct additional research without the patient’s consent.”There is some leeway under the federal regulations governing research involving human subjects for researchers to undertake subsequent research on blood samples provided for genetic testings as long as the samples are anonymous…”(Assessing Genetic Risks: Implications for Health and Social Policy, Institute of Medicine). This texts reveals how easily a genetic testing company can disclose patient’s information because if the patient’s information was secure, at-home DNA testing companies would not be allowed to conduct additional research without the patient’s permission.