What is the promise of personalized medicine and predictive health? Here's a rough description: physicians will know more about individual patients and will therefore be better equipped to provide care. But will it be so simple? In any field, the acquisition of more information, even accurate information, does not necessarily lead to successful application. So, let's say we all buy a test from 23andMe or deCode or Navigenics or any of the growing list of direct-to-consumer genomics company ... and we unpack every last bit and byte of our genetic data, will the world be a healthier place? Or, let's say, just a few of us fork over the $1000 to have our genomic fortunes told … are we really ready for the complications that this information may bring?
If the practice of genetic genealogy is any indication, the future of medicine in the genomic era will be suffused with complications. Nancy Berlinger, of Bioethics Forum, provides an engaging and insightful account of a few of these in "And I am Marie of Romania: Genetics, Genealogy, and the Ethics of Storytelling". Berlinger adds to the ongoing commentary on the new Henry Louis Gates, Jr. venture, AfricanDNA. Gates started this venture, in part, because of frustrations with inaccurate and misleading genetic genealogy results. As Berlinger writes, the misinterpretation (that Gates possesses a genetic link to those once living in the ancient North African kingdom of Nubia, and not, as it turns out, to a less impressive European "servant" in the American colonies) might have been the result of poor science, but also, might be attributed to "wish fulfillment on the part of geneticists and their clients".
To the Gates story, Berlinger contributes related accounts of individuals receiving, accurate, but potentially unwelcome, genealogical information. While America still struggles with its racist inheritance, individuals like Bliss Broyard struggle with new found genealogical information (see her new memoir, One Drop: My Father’s Hidden Life — A Story of Race and Family Secrets). Every one has family secrets--information we are not privy to at the moment--and (as Matt Mealiffe reminds us in Who's Your Daddy?) there's no reason to believe that all or even most of these secrets are about race. Clearly, genetic genealogy (as Blaine Bettinger often notes) is no simple task--will personalized, genetic medicine be any easier? Who will hold and who will expose the secrets in your genome? Is it possible, just maybe, that a one or two of the most enthusiastic, early adopters of personalized medicine will discover a few things they'll wish they'd never known? - J.O.
Showing posts with label genealogy. Show all posts
Showing posts with label genealogy. Show all posts
Friday, December 7, 2007
Wednesday, November 28, 2007
To Blog or To Jog? Genetic Tests and "Life-Changing" Decisions
In his November 26th post "AfricanDNA.com - A New Genetic Genealogy Company", Blaine Bettinger of The Genetic Genealogist reviews a new genetic test and genealogy information provider. The venture (launched by Henry Louis Gates, Jr.--an esteemed literary critic and the director of Harvard's W.E.B. Du Bois Institute for African and African American Research, but not a geneticist) was also the subject of an article by Ron Nixon in The New York Times ("DNA Tests Find Branches but Few Roots", 25 November 2007). In this article Dixon quotes NYU sociologist and former advisor to the Human Genome Project, Troy Duster:
“People are making life-changing decisions based on these tests and may not be aware of the limitations .... While I don’t think any of the companies are deliberately misleading customers, they may have a financial incentive to tell people what they want to hear.”
Bettinger takes issue with the comment and asks: "Do people really make 'life-changing' decisions based upon the results of a genetic genealogy test?" He adds "So, what type of decisions are being referred to, and how often are people really making them?" A quick look at Duster's co-authored editorial in Science (19 October 2007) suggests that these decisions include potentially unexpected and sometimes distressing changes in personal identity, changes in self-reported ethnicity, and the selective financial support of African communities. While Duster's comment was made in the context of a discussion of genetic genealogy testing, he may have also had other genetic testing applications in mind or, perhaps, the unwarranted reification of race in genetic research. [See Duster's "Race and reification in science". Science 2005 Feb 18;307(5712):1050-1.]
Although some individuals (for better or for worse) may make "life-changing" decisions following the receipt of genetic genealogy test results, many more are expected to make these decisions following medical genetic tests. Bettinger's question, however, deserves attention here as well: Do people really make "life-changing" decisions based upon the results of a broad genetic test for uncertain health risks? Many individuals requesting a test for specific genetic disorders (Huntington Disease, for example) do make some life-changing decisions based upon the results, but how will individuals interpret increases in risks for more common health conditions? Heart disease, diabetes, osteoporosis? Many of us already know that we have a family history of one or more these (and other) diseases, but how many of us successfully respond to this information. Will the results of a genetic test provide better motivation to change our lifestyles? How many of us expect to jog more than we blog? -- J.O.
Citations:
Bolnick DA, Fullwiley D, Duster T, and et al. The science and business of genetic ancestry testing. Science. 2007 Oct 19;318(5849):399-400.
PubMed ID: 17947567 | PredictER CiteULike [excerpt]
Duster T. Race and reification in science. Science. 2005 Feb 18;307(5712):1050-1.
PubMed ID: 15718453 | PredictER CiteULike [excerpt]
“People are making life-changing decisions based on these tests and may not be aware of the limitations .... While I don’t think any of the companies are deliberately misleading customers, they may have a financial incentive to tell people what they want to hear.”
Bettinger takes issue with the comment and asks: "Do people really make 'life-changing' decisions based upon the results of a genetic genealogy test?" He adds "So, what type of decisions are being referred to, and how often are people really making them?" A quick look at Duster's co-authored editorial in Science (19 October 2007) suggests that these decisions include potentially unexpected and sometimes distressing changes in personal identity, changes in self-reported ethnicity, and the selective financial support of African communities. While Duster's comment was made in the context of a discussion of genetic genealogy testing, he may have also had other genetic testing applications in mind or, perhaps, the unwarranted reification of race in genetic research. [See Duster's "Race and reification in science". Science 2005 Feb 18;307(5712):1050-1.]
Although some individuals (for better or for worse) may make "life-changing" decisions following the receipt of genetic genealogy test results, many more are expected to make these decisions following medical genetic tests. Bettinger's question, however, deserves attention here as well: Do people really make "life-changing" decisions based upon the results of a broad genetic test for uncertain health risks? Many individuals requesting a test for specific genetic disorders (Huntington Disease, for example) do make some life-changing decisions based upon the results, but how will individuals interpret increases in risks for more common health conditions? Heart disease, diabetes, osteoporosis? Many of us already know that we have a family history of one or more these (and other) diseases, but how many of us successfully respond to this information. Will the results of a genetic test provide better motivation to change our lifestyles? How many of us expect to jog more than we blog? -- J.O.
Citations:
Bolnick DA, Fullwiley D, Duster T, and et al. The science and business of genetic ancestry testing. Science. 2007 Oct 19;318(5849):399-400.
PubMed ID: 17947567 | PredictER CiteULike [excerpt]
Duster T. Race and reification in science. Science. 2005 Feb 18;307(5712):1050-1.
PubMed ID: 15718453 | PredictER CiteULike [excerpt]
Wednesday, October 3, 2007
Biobanks and Dead People: DNA and the Taboo
In an informative, two-part post at the end of August, Blaine Bettinger of The Genetic Genealogist introduced DNA banking for the deceased and questioned the ethics of biobanking without informed consent. In the first post (August 28) Bettinger writes:
DNA storage is being offered by funeral directors and retailers around the world. But it raises a few important questions – how necessary or useful is a dead person’s DNA, and is the retrieval of DNA from someone who has not given consent ethical?
In part 2 (August 29), he notes:
The most important concern about DNA retrieval from the deceased is the question of consent. Unless the deceased was asked before death, retrieval is without consent. Currently, however, you can obtain and analyze anyone’s DNA without consent, so perhaps this isn’t as radical as it seems.
Bettinger's musings stress the importance of individual autonomy--a value that societies often try to protect by requesting "informed consent" or "advanced directives" from willing tissue donors. In the United States many legal drivers have considered the option to consent to organ donation in the event of a fatal accident. Consent, however, for DNA retrieval in such a circumstance, seems somehow out of place … but why? Why isn't DNA retrieval from a recently deceased person protected and facilitated in the same way as is retrieving an eye-ball for transplant or research? Perhaps the latter, organ "retrieval" without a donor's advanced directive, breaks a deep-seated cultural taboo against the mutilation of the human body. If so, why doesn't the thought an unauthorized retrieval of a deceased person's DNA, arouse a similar sense that the human body has been violated? Do we "own" our DNA any less than we own our eyeballs? Is it a matter of aesthetics--DNA retrieval doesn't botch the open casket? Or scarcity? DNA is more common than spit; perhaps we fail to feel as possessive of a bit of human material we are not likely to miss? Or, maybe we just do not include DNA in our concept of the body … How is DNA a part of us? Is it merely information about the body or is it a part of the body our advanced directives are meant to protect?
These are only some of the questions we should consider while entering an era in which the promise of genetic genealogy, genetic research and personalized medicine encourages the practice of DNA biobanking. These are not questions we should leave to funeral directors and the retailers of direct-to-consumer DNA tests. Therefore, The Genetic Genealogist, and many of the other fine blogs at The DNA Network, should be applauded for doing their part to encourage public discussions of these issues.
DNA storage is being offered by funeral directors and retailers around the world. But it raises a few important questions – how necessary or useful is a dead person’s DNA, and is the retrieval of DNA from someone who has not given consent ethical?
In part 2 (August 29), he notes:
The most important concern about DNA retrieval from the deceased is the question of consent. Unless the deceased was asked before death, retrieval is without consent. Currently, however, you can obtain and analyze anyone’s DNA without consent, so perhaps this isn’t as radical as it seems.
Bettinger's musings stress the importance of individual autonomy--a value that societies often try to protect by requesting "informed consent" or "advanced directives" from willing tissue donors. In the United States many legal drivers have considered the option to consent to organ donation in the event of a fatal accident. Consent, however, for DNA retrieval in such a circumstance, seems somehow out of place … but why? Why isn't DNA retrieval from a recently deceased person protected and facilitated in the same way as is retrieving an eye-ball for transplant or research? Perhaps the latter, organ "retrieval" without a donor's advanced directive, breaks a deep-seated cultural taboo against the mutilation of the human body. If so, why doesn't the thought an unauthorized retrieval of a deceased person's DNA, arouse a similar sense that the human body has been violated? Do we "own" our DNA any less than we own our eyeballs? Is it a matter of aesthetics--DNA retrieval doesn't botch the open casket? Or scarcity? DNA is more common than spit; perhaps we fail to feel as possessive of a bit of human material we are not likely to miss? Or, maybe we just do not include DNA in our concept of the body … How is DNA a part of us? Is it merely information about the body or is it a part of the body our advanced directives are meant to protect?
These are only some of the questions we should consider while entering an era in which the promise of genetic genealogy, genetic research and personalized medicine encourages the practice of DNA biobanking. These are not questions we should leave to funeral directors and the retailers of direct-to-consumer DNA tests. Therefore, The Genetic Genealogist, and many of the other fine blogs at The DNA Network, should be applauded for doing their part to encourage public discussions of these issues.
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