Exploring the Current Landscape of Consumer Genomics Proceedings of a Workshop (2020) / Chapter Skim
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2 Understanding Consumer Genomics Use
2 Understanding Consumer Genomics Use
Pages 9-18
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(Bloss) • There are consistent consumer motivations for using DTC genomic tests across the literature, but more data are needed to better understand what effects there may be on individual behavior change as a result of undergoing DTC genetic testing.
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Cinnamon Bloss, an associate professor in the psychiatry and family medicine and public health departments at the University of California, San Diego, spoke about the history and future of consumer genomics use. Then Sara Altschule, a freelance writer for Bustle magazine, and Dorothy Pomerantz, a managing editor at FitchInk, described their personal experiences after receiving results from DTC genomic testing.
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. To get an idea of the impact that DTC genomic testing has had on consumers, Bloss and her colleagues recently conducted a rapid review of the literature, finding 69 articles focusing on genetic health risk tests.
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Researchers have also found that about one-third of consumers share their DTC genomic test results with at least one health care provider, sually the individual's primary care physician. Data on the characteristics u of indi iduals sharing DTC data with their primary care physician are also v inconsistent, Bloss said.
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Because data on consumer trends are limited, she added, newer studies -- for example, using social media strategies to identify trends in real time -- may be needed to assess the influence of demographic factors and the effects of emerging issues. The rise of DTC genomic testing is taking place against the backdrop of a broad and shifting consumer health landscape that expects patients to be more autonomous and that offers more DTC health products, such as heart rate monitors and hearing aids.
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Six months later, she received an email from 23andMe informing her that the company had received Food and Drug Administration (FDA) approval for DTC genomic tests for cancer risk, which included testing for three BRCA1 and BRCA2 variants associated with an increased risk for breast and ovarian cancer in women and prostate cancer in men that are most common in people of Ashkenazi Jewish decent.
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"I stood there in my home office and I was stunned." Her primary care physician connected her to a breast cancer specialist at Cedars-Sinai Hospital who saw her the following day and reiterated the need for confirmation testing before moving forward. A second test confirmed the 23andMe result, and after a long and reassuring conversation with her genetic counselor, she decided to have a preventive double mastectomy and have her ovaries removed.
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Moreover, 23andMe looks at three BRCA variants that are prevalent in individuals of Ashkenazi Jewish ancestry, only some of a much larger number of BRCA variants linked to breast and ovarian cancer, which means that many women stand to receive a "clean bill of health" that could be misleading. "This is not to say that 23andMe should not offer a health screen," Pomerantz said, "but when dealing with serious health issues, people need someone to walk them through it." She said that she wishes she had received her diagnosis from a person rather than from an email so that she could have had support in that moment.
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It is an incorrect conclusion that men cannot transmit breast and ovarian cancer mutations, a participant added, and this is an area where many physicians do not properly counsel their patients. Pomerantz told both of her parents and her brother about her results immediately, but she said there was no sense of alarm.
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Asked if they thought differently about researchers having access to their data versus a pharmaceutical company, both indicated that they did not view the uses differently and hoped that pharmaceutical research could ultimately help patients with BRCA1 and BRCA2 mutations as well. Both said their primary concern was that insurance companies might someday deny coverage because of their mutation status.
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