Topic: Privacy of Personal Genetic Information
Country: Brazil
Delegate Name: Emma Holcomb
School: Royal Oak High School
Topic page: background guide and all position papers All Brazil position papers GLIMUN 2010 committees
The privacy of an individual is recognized by the Brazilian constitution. New technology and the complete sequencing of the human genome pose a new question: Where does personal genetic information fall under privacy guarantees? Personal genetic information can be used in a variety of ways, both beneficial and detrimental to the inherent possessor of the genetic information. It can be used to diagnose genetic disorders and determine the risks of developing certain conditions. The genetic information of many individuals can be used to study the trends and presence of disease and disease risks. The genetic information of many individuals in a family can help to determine the prevalence of a condition in that family. However, personal genetic information can also be used as a tool for discrimination. Although many of Brazil’s citizens do not yet have access to genetic technologies, Brazil recognizes that this is a very real issue for all nations, whether it is one that they are dealing with now or that they will encounter in the future.
It has been established by the United Nations in the Universal Declaration on the Human Genome and Human Rights that an individual’s genetic code cannot be used to discriminate against him or her. However, discrimination is still a very real issue. Should anyone be required to freely give their genetic information to another individual or organization? Due to the discrimination in education, employment, or insurance that could occur because of an individual’s genetic information, Brazil believes that all people should be guaranteed privacy to their own genetic information.
Can an individual’s genetic information be used without their consent in any situation, including studies that are for the public’s benefit, even if there is no way of contacting the individual? I s it acceptable for someone’s family member to use their genetic information for their own benefit, such as assessing disease risk, without gaining permission from them? These questions should be considered before any resolution is passed.
Brazil recognizes an individual’s right to privacy, but also forbids anonymity. Therefore, a company or organization using “anonymous” genetic information would not be acceptable. Brazil hopes to see a resolution passed where all genetic information used in a study would have to be identified and the permission of the individual to use it gained. A good resolution would consider the benefits that someone’s family member could receive from their genetic information. A resolution should also reinforce the idea that all discrimination, including that based on genetic information, will not be tolerated.
Brazil looks forward to a productive conference that will finally establish the privacy that one has to one’s genetic information. Brazil is confident that every delegate present can come to a conclusion under which nondiscriminatory ideas and the rights of individuals will be stressed. This can be achieved by the cooperation of all nations on this important issue.
