By Lorna Speid
With as little thought as combing our hair or brushing our teeth, we tweet, engage with family and friends on Facebook, write blogs, and give our opinions on social media sites. On the major streets of all major cities in the world, children, teenagers, professionals, the unemployed, and pensioners alike take calls and send texts without a second thought. Technology is so much a part of our day to day lives that we can barely remember how we could have managed without it. It is also rapidly advancing and taking us along with it. New inventions are rapidly assimilated into our lives and adopted by the vast majority of society.
The human genome was deciphered in 2003. For most people the Human Genome Project has not made even a ripple in the sea of their lives. Yet this advance is at least as significant as anything developed for connecting society. Unfortunately, the genomic revolution has failed to have any real impact on the lives of the average person on the street — that is, until Angelina Jolie’s announcement. She had recently undergone a double mastectomy because she carries the defective gene BRCA1 and I can’t help but wonder what this might do for society’s familiarity with genomics.
There are very few people that can draw global attention to an issue like Angelina Jolie. From her effective and compassionate action on behalf of the victims of rape in war zones, to bringing light to the plight of orphans in the Third World, she is one of the greatest advocates and ambassadors on substantive causes of her generation. The only other woman that possibly had a greater impact and global reach was the late Princess Diana. Now that Angelina Jolie has brought attention and light to her genomic dilemma and plight, one can’t help but hope that this may be what genomics has needed to bring this substantive, complex, and ethereal subject down to street level, to the technological conversant generation.
BRCA1 and BRCA2 are now registering in many people’s consciousness. BRCA1 is a regulator gene in the human cell that controls cell growth. When this gene is defective, cells multiply in an uncontrolled manner, causing cancer. People that carry the defective gene have a higher probability of developing breast, ovarian, and other cancers than people without the defect. Many such women have already watched other close female relatives in their families die from one or both of these cancers. Angelina Jolie lost her mother to ovarian cancer at the young age of 56.
This needed publicity also helps to shine light on other aspects of genomics, including the patenting of genes. BRCA1 genes were patented by Myriad Genetics in 1997. The Supreme Court is considering the legality of the patenting of the BRCA1 and BRCA2 genes. The legal outcome will be available in June 2013. Of course, the investment of time and effort to determine the importance of the BRCA1 and BRCA2 genes should be financially rewarded. In this case, it seems inappropriate to allow a firm, any firm, to patent a gene that it did not create. Sadly, BRCA1 and BRCA2 are only the tip of the iceberg. Approximately more than 20% of the human genome has been patented.
Myriad Genetics is the only firm that can test for the mutation in the United States, giving Myriad Genetics an effective monopoly. The cost of the test is approximately $3000. This is prohibitively expensive for many women who would take the test if they could. Not only is the test expensive, but the cost of any preventive surgery is also prohibitively expensive for many women.
It is my hope that the Supreme Court will make the right decision in this case. Ordinary women who do not have the access to the resources that Angelina Jolie has should be able to be tested for their BRCA1 and BRCA2 status if they so wish, especially if they are from high risk families. At some point the ethics of earning huge profits in the face of inaccessibility to potentially life-saving tests must be questioned. The economics of greater access to the test may make the test profitable at lower cost rates. Regardless of potentially reduced costs, it has to be asked if it is ethical and responsible for Myriad Genetics to continue to keep the cost of the test as high as it is.
Dr. Lorna Speid is the author of Clinical Trials: What Patients and Healthy Volunteers Need to Know. She is the president of Speid and Associates, Inc., a regulatory affairs and drug development consultancy and has worked for the international pharmaceutical industry since the late 1980s.
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