When reflecting upon the greatest medical advancements in the last fifty years of medicine, certain broad and worthy categories come to mind. Imaging technology, drug design, and minimally invasive surgery have made great changes in how patients are treated. As a fourth year medical student, I routinely request a CT, suggest a regimen of Gleevac, or recommend a laproscopic procedure. All of these advances have made waves in the practice of medicine, public expectations, and medical education. Predictive health research, however, has not yet fully entered the medical school curriculum.
I doubt whether there is a single undergraduate who gains acceptance to medical school who cannot identify the names Watson or Crick or explain the basic function of DNA. By now, most students are also aware of the recent completion and publication of J. Craig Venter’s genome. Nevertheless, discussions with my peers suggest that medical students may not be fully prepared for the medical and ethical implications of recent genetic research. Predictive health research discoveries are taught, but the potential clinical applications are lost in translation--stuck somewhere on the path from the bench to the bedside . . . or, in my case, from the pages of the textbook to the patient.
For my generation of medical students, predictive health research has the potential to significantly change the practice of medicine. While programs like the Personal Genetics Education Project at Harvard are building interest in predictive health, and while the public is flooded by a confusing array of genetics news reports, what are medical schools doing to prepare future physicians for the predictive health revolution?
Medical students and educators should step up their efforts to join the conversation about the clinical promise and ethical issues of predictive health. We need to start thinking and talking about how we make use of the predictive tools we already have and how we will prepare for future tools. For example, how many of us are ready to explain to new parents the meaning of normal newborn screening results? Are we fully prepared to share the non-watered-down reasons for why we may want a fifty-year old man to get a colonoscopy? Are we ready to address the anxieties of a patient considering a genetic test to better determine her risk of breast cancer? Clearly, students and bloggers like Bertalan Meskó at ScienceRoll are doing their share to spread the word, but we should encourage our mentors and professors to join the discussion. What is the current state of predictive health, and where can we expect it to advance?
[Note: To encourage a public discussion of the ethical, legal and social implications of predictive health research, PredictER Blog will be inviting guest contributions from students, professionals, and interested members of the public. This post from Pat Barrett, a fourth year medical student at the Indiana University School of Medicine and a graduate student of the Indiana University School of Philosophy, is a fitting introduction to this new feature of PredictER Blog. -- J.O.]
Monday, September 10, 2007
Tuesday, August 28, 2007
Announcing PredictER News Brief: A Digest of Predictive Health and Ethics Research News
The first three issues of PredictER News Brief are now publically available from the “Resources” page of PredictER’s information portal. This news digest reports predictive health press releases, headlines, events, and recent academic publications. These include the following topics: human genetic research, genetic testing and counseling, longitudinal health research, personal health records, pharmacogenomics, translational medical research, public attitudes toward predictive health research, and recent developments in public policy.
PredictER News Brief is a tool for readers interested in the ethical, legal, and social implications of predictive health research. In the near future PredictER News Brief will offer RSS feeds. At this time requests for email subscriptions from PredictER’s Gmail account are welcomed; the digest is published biweekly on PredictER’s web site; visit the tab. “News Digest”. Additional information services and research tools (including: web accessible research databases, subject guides, custom search engines, and a full-text digital library) are currently under development.
PredictER News Brief is a tool for readers interested in the ethical, legal, and social implications of predictive health research. In the near future PredictER News Brief will offer RSS feeds. At this time requests for email subscriptions from PredictER’s Gmail account are welcomed; the digest is published biweekly on PredictER’s web site; visit the tab. “News Digest”. Additional information services and research tools (including: web accessible research databases, subject guides, custom search engines, and a full-text digital library) are currently under development.
Sunday, August 19, 2007
Health Risk Assessments in the Workplace: Clarian Health, Indianapolis.
At the end of last month Clarian Health of Indianapolis announced a new direction in its wellness and health mission for its 13,000 employees. To enroll for their benefits employees will be required to complete health risk appraisals. Those who fail to meet the employer’s minimum standards for blood pressure, BMI, blood glucose, LDL cholesterol and tobacco use will be fined $5 per condition per paycheck.
Clarian joins many large employers who are attempting to cut health care expenses by offering or requiring health appraisals and incentive-based health promotion measures. As reported by Jessica Marquez in “Being healthy may be its own reward, but a little cash can also help keep works fit” companies (including Delta, Sprint and IBM) are discovering that merely offering a wellness program does not change employee behavior (Workforce Management, September 2005, pp. 66-69 [link requires login]). In fact, as of 2002, Hewitt Associates found that health risk appraisals are increasingly used to refer employees to health intervention programs and 40% of the 960 companies offered financial incentives for participation and/or progress.
Clarian’s announcement drew national attention; negative incentives (docked paychecks) are seldom reported. Coverage in the IndyStar, the La Times and on MSNBC’s TODAY prompted comments from some of the most widely read health and bioethics blogs. Some of these posts, like Kelly Hill’s “Shape Up or Pay Up” (Women’s Bioethics Blog, 30 July 2007), point to the genetic factors in many health conditions and question the fairness of financial disincentives. Hill writes:
Arthur Caplan, in “Privacy is the true price of healthy worker discounts” (blog.bioethics.net, 16 August 2007 and MSNBC’s Breaking Bioethics, 15 August 2007), echoes Hills concerns about genetics in the context of personal responsibility:
Caplan’s comment points to an interesting question for the ethics of predictive health. What are the “responsibilities,” personal or social, that accompany a predictive appraisal of one’s health risks? Do individuals with a family history of heart disease have a personal obligation (for the good of the community) to eat well and exercise? If so, who will define and adjudicate these “responsibilities”? Government agencies? Employers? Physicians?
Clarian joins many large employers who are attempting to cut health care expenses by offering or requiring health appraisals and incentive-based health promotion measures. As reported by Jessica Marquez in “Being healthy may be its own reward, but a little cash can also help keep works fit” companies (including Delta, Sprint and IBM) are discovering that merely offering a wellness program does not change employee behavior (Workforce Management, September 2005, pp. 66-69 [link requires login]). In fact, as of 2002, Hewitt Associates found that health risk appraisals are increasingly used to refer employees to health intervention programs and 40% of the 960 companies offered financial incentives for participation and/or progress.
Clarian’s announcement drew national attention; negative incentives (docked paychecks) are seldom reported. Coverage in the IndyStar, the La Times and on MSNBC’s TODAY prompted comments from some of the most widely read health and bioethics blogs. Some of these posts, like Kelly Hill’s “Shape Up or Pay Up” (Women’s Bioethics Blog, 30 July 2007), point to the genetic factors in many health conditions and question the fairness of financial disincentives. Hill writes:
- [S]hould obesity, high blood pressure, and high cholesterol – things that can be genetic—be looked at with the same light [as smoking]? Should you have to pay $60 a month because your father gave you his high cholesterol?
Arthur Caplan, in “Privacy is the true price of healthy worker discounts” (blog.bioethics.net, 16 August 2007 and MSNBC’s Breaking Bioethics, 15 August 2007), echoes Hills concerns about genetics in the context of personal responsibility:
- Who will be next? The guy who skis on the weekends? The woman who wears high heels? What about the family that decides to have a baby, knowing the child may have sickle-cell disease or cystic fibrosis? Will companies be willing to put up with that sort of personal “irresponsibility”?
Caplan’s comment points to an interesting question for the ethics of predictive health. What are the “responsibilities,” personal or social, that accompany a predictive appraisal of one’s health risks? Do individuals with a family history of heart disease have a personal obligation (for the good of the community) to eat well and exercise? If so, who will define and adjudicate these “responsibilities”? Government agencies? Employers? Physicians?
Sunday, August 5, 2007
PredictER Blog on Break This Week
Readers,
PredictER Blog will not post during the week of August 5. If you are interested in other blogs on bioethics, genetics research, predictive and personalized medicine, visit PredictER's Blog Roll:
Adaptive Complexity
blog.bioethics.net
The Daily Transcript
Eye on DNA
Gene Expression
The Genetic Genealogist
The Personal Genome
Philosophy and Bioethics
ScienceRoll
Friday, August 3, 2007
Prediction and Addiction
Pediatrics and Nicotine -
A recent publication on pediatric genetic testing for nicotine addiction reported the results of an attitudes survey of 232 health providers attending a conference on adolescent health. In "Interest in Genetic Counseling and Testing for Adolescent Nicotine Addiction Susceptibility ... ", the authors from the Lombardi Comprehensive Cancer Center at Georgetown University (Kenneth Tercyak, Beth Peshkin, Anisha Abraham and Leslie Walker) examined correlates in providers' interests:
See:
Genetic testing for addiction could have far reaching implications in the criminal justice system. A press release from The University of Texas Health Center at Tyler ("Four researchers at UT Health Center receive grants ... ".News & Information. Thursday, July 19, 2007) announced a four year of $1.76 million from the NIH to study the ethical, legal, and social implications of the non-health use of personal genetic data. Genetic tests could be used, for example, in determining the length of sentences for offenders with genetic risks for addiction. The project will:
A recent publication on pediatric genetic testing for nicotine addiction reported the results of an attitudes survey of 232 health providers attending a conference on adolescent health. In "Interest in Genetic Counseling and Testing for Adolescent Nicotine Addiction Susceptibility ... ", the authors from the Lombardi Comprehensive Cancer Center at Georgetown University (Kenneth Tercyak, Beth Peshkin, Anisha Abraham and Leslie Walker) examined correlates in providers' interests:
- Providers who engaged in more regular tobacco screening behaviors with their adolescent patients ... and those who were more optimistic that biobehavioral research would lead to significant improvements in adolescent smoking prevention and treatment ... , were more interested in counseling and testing.
See:
- Tercyak KP, Peshkin BN, Abraham A, Wine L, Walker LR. Interest in genetic counseling and testing for adolescent nicotine addiction susceptibility among a sample of adolescent medicine providers attending a scientific conference on adolescent health. J Adolesc Health. 2007 Jul;41(1):42-50. [Abstract at PredictER Connotea.]
Genetic testing for addiction could have far reaching implications in the criminal justice system. A press release from The University of Texas Health Center at Tyler ("Four researchers at UT Health Center receive grants ... ".News & Information. Thursday, July 19, 2007) announced a four year of $1.76 million from the NIH to study the ethical, legal, and social implications of the non-health use of personal genetic data. Genetic tests could be used, for example, in determining the length of sentences for offenders with genetic risks for addiction. The project will:
- · Create an open-access online database of the current criminal and sentencing laws employing drug addiction information;
- · Survey the attitudes and information needs of drug-court judges, corrections officers, and drug treatment professionals regarding genetic research and the science of addiction;
- · Engage these stakeholders in public discussions of the issues;
- · Develop an open access, online resource for training, education, and reference materials on the subject.
- We hope that our findings have some influence on the development of state laws and policies for the use of this genetic data in these settings. Right now there’s no uniformity. Jurisdictions may treat this information very differently.
Tuesday, July 31, 2007
Web 2.0 + Medicine = Medicine 2.0: Featured Blogs
ScienceRoll and Medicine 2.0
Readers interested in casual discussions on the future of medicine at the cross-roads of genetics research, electronic medical records, and the internet will find plenty to read in recent blog entries using the terms "Medicine 2.0" or "Health 2.0". Advocates of the subject, include Bertalan Meskó, a medical student at the University of Debrecen (Hungary). Meskó, who monitors and writes about the topic in his blog ScienceRoll, holds that "the new generation of web services, will [play] (and already is playing) ... an important role in the future of medicine. These web tools, expert-based community sites, medical blogs and wikis can ease the work of physicians, scientists, medical students [and] ... medical librarians". In addition to regular posts on his blog, Meskó also edits a weekly blog carnival (an index or review of blog entries) on the subject, entitled Medicine 2.0. Mesko's ScienceRoll also contributes entries on genomics, clinical genetics, genetic testing, and personalized medicine.
"Medical Ethics 2.0"
Science Roll, July 19, 2007 and Medicine 2.0, hosted recently by J.C. Jones at HealthLine Connect were among several blogs citing "Medical Ethics 2.0", published July 16th by Jason Bobe at The Personal Genome . [Others citing Bobe include: Philosophy and Bioethics and The CEP Library.] Bobe discusses the possibility that future users of online genealogy services may begin to add medical information to their family trees. Following his review of the BMJ “Head-to-Head” feature: “Should families own genetic information?” [BMJ 2007;335:22 (7 July), doi:10.1136/bmj.39252.386030], he questions how user-generated genetic information and Web 2.0 technologies would complicate the ethical problems of privacy and disclosure.
Medical Ethics 3.0?
In "Health care eyes Web 3.0" (Government Health IT, 16 July 2006), Brian Robinson reports on developing Semantic Web technologies and their anticipated impact on the medical formatics and health care provision. The Semantic Web uses Resource Description Framework (RDF), Web Ontology Language, and other ontologies to "ascribe meaning to data depending on the context in which it is used". The Semantic Web is expected to provide, for example, the ability to "identify data related to age, weight and diseases, and ... then deliver that data based on the context of a query". Projects in development include: rules-based diagnostic decision-support systems for Partners HealthCare System (Boston) and a public health surveillance system under the direction of Parsa Mirhaji at the University of Texas Health Science Center at Houston.
In addition to Mirhaji, comments are provided from Dean Giustini (Biomedical Branch Library, University of British Columbia), Vipul Kashyap (Partners HealthCare), and Bob Shimp (Oracle's Global Technology Business Unit). The story does not, however, explore the social and ethical implications of the Semantic Web for medical research.
Readers interested in casual discussions on the future of medicine at the cross-roads of genetics research, electronic medical records, and the internet will find plenty to read in recent blog entries using the terms "Medicine 2.0" or "Health 2.0". Advocates of the subject, include Bertalan Meskó, a medical student at the University of Debrecen (Hungary). Meskó, who monitors and writes about the topic in his blog ScienceRoll, holds that "the new generation of web services, will [play] (and already is playing) ... an important role in the future of medicine. These web tools, expert-based community sites, medical blogs and wikis can ease the work of physicians, scientists, medical students [and] ... medical librarians". In addition to regular posts on his blog, Meskó also edits a weekly blog carnival (an index or review of blog entries) on the subject, entitled Medicine 2.0. Mesko's ScienceRoll also contributes entries on genomics, clinical genetics, genetic testing, and personalized medicine.
"Medical Ethics 2.0"
Science Roll, July 19, 2007 and Medicine 2.0, hosted recently by J.C. Jones at HealthLine Connect were among several blogs citing "Medical Ethics 2.0", published July 16th by Jason Bobe at The Personal Genome . [Others citing Bobe include: Philosophy and Bioethics and The CEP Library.] Bobe discusses the possibility that future users of online genealogy services may begin to add medical information to their family trees. Following his review of the BMJ “Head-to-Head” feature: “Should families own genetic information?” [BMJ 2007;335:22 (7 July), doi:10.1136/bmj.39252.386030], he questions how user-generated genetic information and Web 2.0 technologies would complicate the ethical problems of privacy and disclosure.
Medical Ethics 3.0?
In "Health care eyes Web 3.0" (Government Health IT, 16 July 2006), Brian Robinson reports on developing Semantic Web technologies and their anticipated impact on the medical formatics and health care provision. The Semantic Web uses Resource Description Framework (RDF), Web Ontology Language, and other ontologies to "ascribe meaning to data depending on the context in which it is used". The Semantic Web is expected to provide, for example, the ability to "identify data related to age, weight and diseases, and ... then deliver that data based on the context of a query". Projects in development include: rules-based diagnostic decision-support systems for Partners HealthCare System (Boston) and a public health surveillance system under the direction of Parsa Mirhaji at the University of Texas Health Science Center at Houston.
In addition to Mirhaji, comments are provided from Dean Giustini (Biomedical Branch Library, University of British Columbia), Vipul Kashyap (Partners HealthCare), and Bob Shimp (Oracle's Global Technology Business Unit). The story does not, however, explore the social and ethical implications of the Semantic Web for medical research.
Wednesday, July 25, 2007
Smith-Lemli-Opitz Syndrome and a Florida “Wrongful Birth” Case
On July 23, 2007 a jury in Tampa awarded Daniel and Amara Estrada $21 million for a prenatal mis-diagnosis. The couple claimed that if the University of South Florida, Dr. Boris Kousseff had successfully diagnosed the genetic disorder, they would have terminated the pregnancy. The jury’s award is currently limited by state limits on negligence claims against public universities and other government agencies.
Greg Dahlmann, in yesterday’s posting on The American Journal of Bioethics’ editors’ blog (blog.bioethics.net) provides a comment on the use of the term "wrongful birth" and a brief summary of the case. blog.bioethics.net links to the following news sources:
A recent article by Carolyn Chachkin, What potent blood: non-invasive prenatal genetic diagnosis and the transformation of modern prenatal care, published in the American Journal of Law & Medicine (2007. Vol. 33, No. 1, 9-53) provides a review of the many ethical, legal and social implications of prenatal genetic diagnosis; these include “wrongful birth” lawsuits.
Greg Dahlmann, in yesterday’s posting on The American Journal of Bioethics’ editors’ blog (blog.bioethics.net) provides a comment on the use of the term "wrongful birth" and a brief summary of the case. blog.bioethics.net links to the following news sources:
- Couple awarded $21 million in Florida 'wrongful birth' case. Tampa, Florida (AP). CNN.com/us, July 24, 2007.
For 'wrongful birth,' $23.5M: A jury sides with a family over a USF geneticist's "rotten advice." By Colleen Jenkins, St. Petersburg Times, July 24, 2007.
USF, Physician Liable For Botched Diagnosis. By Thomas W. Krause. The Tampa Tribune, July 24, 2007
A Wrongful Birth? By Elizabeth Weil. The New York Times Magazine, March 12, 2006.
A recent article by Carolyn Chachkin, What potent blood: non-invasive prenatal genetic diagnosis and the transformation of modern prenatal care, published in the American Journal of Law & Medicine (2007. Vol. 33, No. 1, 9-53) provides a review of the many ethical, legal and social implications of prenatal genetic diagnosis; these include “wrongful birth” lawsuits.
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