Genetics and privacy
by Karam Bayrakal
Principally, the federal Personal Information Protection and Electronic Documents Act (the “Act”) is a tool for the control of personal information in the commercial setting, but the Act has painted personal health information with the same broad brush used for personal information in commerce. Divulging your postal code to rent a movie is not the same as divulging information about your predisposition to various diseases or undesirable behaviours. Notably, however, the genetic code only indicates a person’s predisposition towards a particular outcome; it does not, alone, determine any outcome. Factors such as exercise, diet and socio-economic status significantly impact an individual’s likelihood of developing an ailment, or having success in life.
The Act applies to personal health information and the Canadian federal privacy commissioner recently indicated that genetic information is personal health information and therefore, the Act applies to genetic information (See speech text given September 13, 2001 to the UNESCO 8th Annual Bioethics Committee, Paris, France). The Act needs to address the special nature and extreme sensitivity of the health information contained in the genetic code in a balanced manner that does not materially impair research or health science.
Who owns you now?
The Act does not address the ownership of the actual sample of genetic material or the issue of who owns derivative products created from genetic information or samples. Some U.S. state governments have enacted legislation giving ownership of genetic material to individuals, but the biotechnology industry is using its influence on legislators to replace the ownership right with a right merely to protect such information.
Although some commentators have perceived this regression of personal rights negatively, there is a risk in making genetic material “property”; once “property” is sold then it is gone for good. Your evil twin may make millions selling her genetic code, but suddenly you are the property of a biotech company.
Public confidence and private fears
While questions remain regarding the ownership, treatment and privacy of genetic information and material, individuals will be reluctant to provide their genetic information in the same way people are hesitant to submit personal information online due to privacy concerns. Organizations need to implement practices that protect privacy so that individuals can submit their genetic information or samples for testing or research, with confidence.
Organizations can, and should, avoid associating genetic data with identifiable individuals. This can be achieved through ‘blinding’ procedures that separate technical genetic information from information that identifies the individual. Separation should occur at the scientific and administrative levels and personal information should be stored off-line to prevent unauthorized hackers from accessing the information. Another practised method to encourage people to provide their genetic information is anonymous testing, known as “alias testing” where the donor remains unidentified. However, this practice could lead people to make fraudulent statements on applications for products like health insurance, if anonymous testing reveals a particular predisposition the disclosure of which might raise their costs for insurance or negate future claims.
Consent is a key issue in respect of divulging genetic information, and the Act is clear that obtaining any personal information from an individual must only be done with the individual’s consent for a specific purpose. Taking the importance of consent a step further, the U.K.’s Human Genetics Commission intends to urge U.K. parliamentarians to criminalize the non-consensual collection of genetic material of individuals. Bearing in mind that genetic material can be lifted from a restaurant glass or a computer keyboard, the concern becomes more relevant.
Privacy is considered one of the essential rights of Canadians, and Canadian legislators and the public need to ensure that a balance is struck between an individual’s very fundamental interest in the privacy of their genetic information and the societal interest in understanding and utilizing genetic information for medical research and improvements to health science.
Karam Bayrakal is an Associate at the Vancouver office of Lang Michener in its Information Technology Law Group, whose work primarily involves information technology outsourcing, technology licensing and corporate partnering.
This article was published in the April 2002 issue of BarTalk. © 2002 The Canadian Bar Association. All rights reserved.