As usual, technological progress often cuts both ways. For each advancement, there will be the potential risk of abuse or harm. Once the human genome was mapped and all our genetic information could be determined, people began wondering about privacy issues. Discrimination concerns. Tampering with the genome. Patenting the genome.
New companies trying to make a profit are hyping this like never before. This piece in the New England Journal of Medicine does a fair job of highlighting the problems with companies offering us services that in the past we never even knew we needed.
” As of November 2007, two companies have made available direct-to-consumer “personal genome services” (www.23andme.com) or “gene profiles” (www.decodeme.com) that rely on the same arrays of 500,000 to 1 million SNPs used in genomewide association studies. A third company (www.navigenics.com) has announced that it will offer similar services later this year. Essentially, a client sends a DNA sample to one of these firms, which analyzes the sample by means of SNP array; the data are stored in an online private account, the results are compared with allele–phenotype databases maintained and updated by the company, and the customer receives a readout of his or her levels of risk for specific conditions.”
We must ask ourselves:
- What are we testing for and why
- Is there a treatment or therapy available
- What will we do with this genetic information
- How accurate and reliable is this information
- Is information the same as knowledge
- Who will have access to this information
- Can it be used for or against me
Another wrinkle in our Brave New World!
- Jennifer Lahl, MA, BSN, RN, is founder and president of The Center for Bioethics and Culture Network. Lahl couples her 25 years of experience as a pediatric critical care nurse, a hospital administrator, and a senior-level nursing manager with a deep passion to speak for those who have no voice. Lahl’s writings have appeared in various publications including Cambridge University Press, the San Francisco Chronicle, the Dallas Morning News, and the American Journal of Bioethics. As a field expert, she is routinely interviewed on radio and television including ABC, CBS, PBS, and NPR. She is also called upon to speak alongside lawmakers and members of the scientific community, even being invited to speak to members of the European Parliament in Brussels to address issues of egg trafficking; she has three times addressed the United Nations during the Commission on the Status of Women on egg and womb trafficking.