On Monday, March 17, two Indiana University mental health researchers, Dr. John I. Nurnberger and Dr. Alexander B. Niculescu III, addressed the weekly PredictER meeting at the IU Center for Bioethics in a talk entitled: “Genome-Wide Association Studies: What Have We Learned So Far". Dr. Nurnberger is the current director of the Institute of Psychiatric Research at the IU School of Medicine and Dr. Niculescu is Assistant Professor of Psychiatry and the Director of the Laboratory of Neurophenomics. Niculescu, Nurnberger and others recently published a widely discussed [see Steve Mitchell, MSNBC, 25 Feb. 2008] blood biomarkers for mood disorders study [PMID 18301394 - PDF].
Current Challenges in Understanding and Treating Mental Health Disorders
Dr. Nurnberger (who chaired the first portion of the lecture) began the talk by outlining the prevalence of various neuropsychiatric disorders, focusing especially on Bipolar disorder. Dr. Nurnberger's discussion was supplemented by an explanation from Dr. Niculescu of some of the shortcomings that past attempts to understand the genetic links to depressive/Bipolar disorders have had. According to Dr. Niculescu, “Until recently, the lack of concerted integration between the two approaches [has]… constituted a missed opportunity to accelerate our understanding of this complex and heterogeneous group of disorders”. Simply put, mood disorders involve many, many genes, which may be present in various combinations in any one of us, and interact in ways that defy easy classification. While it is clear that individuals with certain psychiatric disorders may have certain combination more often, we are far from understanding precisely which genes are responsible for which portions of the disorders.
Dr. Niculescu then detailed two main “arms” of his research; the first involves an innovative response to the problem of how to create a sophisticated working picture of the genomics involved in mental illness. Using a technique called Convergent Functional Genomics (CFG), Dr. Niculescu's team brings data from three sources together - animal model gene expression data, human genetic linkage/association data, and finally human tissue (postmortem brain, blood) data.
The advantages of bringing these there sources of information together are manifold. Dr. Niculescu’s team has been able to cross-validate findings from other research studies. This has helped his team to “extract meaning from large datasets" and to prioritize "candidate genes, pathways and mechanisms for subsequent targeted, hypothesis-driven research”. Furthermore, as Dr. Niculescu indicates, this convergent functional genomics approach may help to deliver on one of the most exciting and elusive goals of genetic research in the area of mental health: a blood test that could identify blood biomarkers of an illness.
“PhenoChipping” and the Move Towards More Individualized Mental Health Care
As part of working towards this goal, Dr. Niculescu’s research team is implementing another innovative approach – the use of PhenoChipping. In layterms, a gene is thought to be like a “blueprint” for how something biological is built; a phenotype is the way that thing is actually built and lives, which may diverge from the plan, or may change over time according to its environment. “PhenoChipping”, thus, refers to the process of collecting mental health data from subjects using a massive inventory of cognitive and affective tools. Researchers are hoping to combine this “in vivo” data with advanced genomic data to better understand what complex interaction of genes, environments, stress, and other factors participate in these serious and highly complex neuropsychiatric disorders.
Dr. Niculescu and his team see their research as moving towards the development and implementation of more tailored, personalized treatments in psychiatry. In this more personalized medicine the patient's unique profile is the target of therapeutic interventions. Dr. Niculescu states: "We hope our work will contribute to better diagnostics, early intervention and prevention efforts, and more efficacious treatments, with reduced side-effects".
Some Ethical Questions:
This research is a rich playing field for bioethics with its intersection of illness, consent, duress, technology, and research whose implications (and even direction ) can barely be anticipated from where we stand. Some questions to consider are:
What are the ethical issues to be considered when conducting research on populations of people that are ill, and ill in a way that affects judgment?
What does consent to mental illness research mean in the absence of a cure?
What if we were able to develop a blood test that help predictive capacity for determining if someone was at risk of developing a mood disorder? What would individuals want to know, and under what circumstances?
In what ways would the ethics of this predictive, diagnostic power mimic existing models in the ethics of disclosure of illness? How, for example, would it differ from existing ethical frameworks for disclosing HIV status, terminal illness, and other conditions?
What does participation in long-term mental health genomic studies mean for participants? Can participants “withdraw” from research, and if so, what happens to their data?
– Noah Zanville
[PredictER Blog welcomes this first contribution from Noah Zanville. Noah is nursing student in the accelerated track at the Indiana University School of Nursing. He serves as a member of IU School of Nursing's Leadership Council and is a key figure working with the local chapter of National Student Nurses Association. He is currently preparing to accept a position as a Research Assistant doing applied bioethics research around end of life issues in ICU settings through the Charles Warren Fairbanks Center for Medical Ethics.
Noah earned his bachelor's in Philosophy from the University of Oregon, and is a Licensed Massage Therapist with an emphasis in Lymphedema Management, Medical Massage in acute-care settings and energy work. Noah also worked as a free-lance medical illustrator for a time.]
Showing posts with label psychiatrics. Show all posts
Showing posts with label psychiatrics. Show all posts
Friday, March 28, 2008
Friday, February 29, 2008
Predictive Health: Best Ethics Blogs - February 2008
This second, monthly installment (see January's Best Ethics Blogs) includes blogs on the ethical issues of biobanking, the risks of genetic testing and discrimination, responses to a recent New York Times article, and thoughts about Google Health and HIPAA compliance. Entries are listed below by topic and date.
Biobanks
Biobanking, part 3: returning research results to participants. Sue Trinidad, Women's Bioethics Blog. 4 February 2008.
Continuing her excellent series on biobanking, Sue Trinidad, asks readers to consider the following scenario: "Let's say that--20 years after you consented to participate in a breast cancer study--researchers working on a different project discover that you carry a genetic mutation that has been definitively linked to Serious Medical Problem X. ... Do the researchers have a professional and/or moral obligation to share this information with you?"
More on BioBanking. Sue Trinidad, Women's Bioethics Blog. 6 February 2008.
In a fourth post on biobanking, Trinidad responds to a BBC News story ("Change planned on cloning consent", 2 February 2008). The story reports that the UK government may allow the use of tissues donated for research for embryonic cloning without requiring the explicit consent of donors. Sue asks: "[J]ust what should be the scope of allowed activities under a 'blanket' or 'one-time' consent? Also, should the research imperative (and perhaps the common good) outweigh individuals' preferences in such cases?"
[Also see Trinidad's posts on the clinical utility of genetic tests (1 February 2008) and beneficiaries of prenatal genetic diagnosis (22 February 2008).]
Consumer Genetics
While The DNA Network provides a constant stream of quality blogs on the ups and downs, ins and outs of direct-to-consumer, genetic medicine, two caught my attention this month for demonstrating creativity and gumption.
Polls Closed, Myriad Tallies Up and We await Navagenics! Steve Murphy, Gene Sherpas: Personalized Medicine and You. 11 February 2008.
In an informal survey of his readers, Murphy discovers that most think 23andMe is the most likely to be sued first. In assessing the litigious environment, the Sherpa (Murphy's pithy alter-ego) comments: "If I had a law degree … I would bone up on genetics legal precedent, corporate protections and genetic discrimination. If you think a certain ex-candidate for president made a bundle suing OB/Gyns, you haven't seen the beginning of the legal fortune to be made in genomics."
DNA Videos: Genetic Testing on NBC Nightly News. Hsien-Hsien Lei, Eye on DNA. 13 February 2008.
In this post Lei embeds videos from the Robert Bazell NBC Nightly News series "The Truth About DNA". One of these features Stanford's Hank Greely, who expresses his worries about the genetic testing market place. In a follow-up blog post, Bazell laments a "frightening lack of government regulations". After wondering if Greely and Bazell are "easily scared", Lei takes the advice of a genetic counselor (Ellen Matloff) and writes a sample letter for "Johnny" to open a discussion of his genetic test results with his family members. Will his parents be surprised to discover that he blames them for everything? Maybe someone should persuade Johnny's "parents" to write a reply.
Discrimination
Q&A with MDV’s Bill Ericson: On PacBio’s origin, why Gattaca isn’t our future, and throwing out your statins. David P Hamilton, VentureBeat: Life Sciences. 15 February 2008.
In this interview with Bill Ericson of Mohr Davidow Ventures, Hamilton asks: "What about the potential downsides, such as genetic discrimination that could leave many people uninsurable, or even the possibility that society could end up stratified by genetic caste, as in the movie Gattaca?" Ericson responds, in part, "I worried a lot about those negative implications when we started investing, but American society is, I think, mature enough to deal with the information, whether by legislation or via general social norms."
Rewarding Ignorance. Doug Masson, Masson's Blog – A Citizen's Guide to Indiana. 24 February 2008.
Doug Masson was among the many bloggers (including Steve Murphy and Sue Trinidad) responding to Amy Harmon's New York Times article "Insurance Fears Lead Many to Shun DNA Tests" (24 February 2008). After describing how the insurance industry needs a degree of "ignorance" to survive, Masson observes: "as our knowledge of a person’s likely health care profile increases, paying for medical treatment becomes less about managing risk through insurance and more about determining what our obligations might be toward our fellow humans in subsidizing their ability to live and/or remain healthy".
Bipolar Blood Test? Let The Bloodbath Begin. Philip Dawdy, Furious Seasons. 28 February 2008.
Dawdy, a patient, reacts to the latest research news about the search for psychiatric biomarkers. Research at Indiana University School of Medicine has isolated blood markers to identify mood disorders. Lead author, Alexander B. Niculescu III, M.D., Ph.D. (a future guest at our weekly PredictER meeting), hailed the research as "a major step towards bringing psychiatry on par with other medical specialties that have diagnostic tools to measure disease states and the effectiveness of treatments". If, however, a test is developed, Dawdy declares, "I am going nowhere near that test because its results--unless you do the test privately--will follow me the rest of my life and be used to discriminate against me and people like me in insurance (health and life), employment, schools, housing and God knows what all".
Health IT and Medical Records
Of Slelling and Men. Steve Murphy, Gene Sherpas: Personalized Medicine and You. 3 February 2008.
After defining "slelling" and recounting the scandals that have limited the possibility of selling health data without the explicit consent of patients, Murphy cites Emanuel EJ, Wendler D, and Grady C (2000) to summarize how "ethicists feel" about data acquisition in clinical research.
Engineering Grand Challenges – Advancing health informatics. Deepak Singh, bbgm. 19 February 2008.
In reviewing an article published on the National Academy of Engineering website, Deepak Singh notes that the technological challenges of health informatics are inseparable from some common ethical concerns. Singh's notes that "[w]hile the article refers to privacy and security, it does not address the issues of content ownership and data portability". Among the questions the Singh would like to see answered are: "Who owns someones medical data? How does it move from one system to another? What parts can a physician have access to? [And] what are the dangers of a system controlled by the user … [?]"
Google PHR roll-out: how personal will a personal health record be? David Harlow, HealthBlawg. 24 February 2008.
Although any news about Google's developing personal health records platform "Google Health" results in an avalanche of blog posts, David Harlow was among the rare bloggers to recognize and speculate about the medical research potential of these records. In reflecting on the privacy and HIPAA challenges that Google's personal health records may bring, Harlow remarks:
So let's assume the worst: Google will sell ads to the highest bidders for keywords in your PHR (kinda OK so long as there's adequate disclosure up front), will sell aggregated de-identified data for population-based health studies (ditto, but this seems more like a good thing, and is really at the heart of the value of EHRs and PHRs generally -- though the utility depends on how much data really finds its way into the PHR, and how it's organized) and worst of all, will mistakenly convert your PHR into an RSS feed that ends up on every computer in America (eek! . . . but is that worse than dropping a paper record behind a file cabinet and never finding it again?) … Every innovation comes with a set of benefits and burdens.
Politics
One gene, two genes; red genes, blue genes. Jesse Reynolds, Biopolitical Times. 14 February 2008.
Reynolds responds to an article published in New Scientist, "Two tribes: Are your genes left-wing or right-wing?" (2 February 2008). Following a critical assessment of the media coverage and a skeptical review of efforts to study the genetics of political attitudes and behavior, Reynolds identifies a potential "disturbing" social implication for such research: "accepting that genes determine political orientation could cause deepening political apathy … Heck, why bother voting when you could just have your cheek swabbed?"
Biobanks
Biobanking, part 3: returning research results to participants. Sue Trinidad, Women's Bioethics Blog. 4 February 2008.
Continuing her excellent series on biobanking, Sue Trinidad, asks readers to consider the following scenario: "Let's say that--20 years after you consented to participate in a breast cancer study--researchers working on a different project discover that you carry a genetic mutation that has been definitively linked to Serious Medical Problem X. ... Do the researchers have a professional and/or moral obligation to share this information with you?"
More on BioBanking. Sue Trinidad, Women's Bioethics Blog. 6 February 2008.
In a fourth post on biobanking, Trinidad responds to a BBC News story ("Change planned on cloning consent", 2 February 2008). The story reports that the UK government may allow the use of tissues donated for research for embryonic cloning without requiring the explicit consent of donors. Sue asks: "[J]ust what should be the scope of allowed activities under a 'blanket' or 'one-time' consent? Also, should the research imperative (and perhaps the common good) outweigh individuals' preferences in such cases?"
[Also see Trinidad's posts on the clinical utility of genetic tests (1 February 2008) and beneficiaries of prenatal genetic diagnosis (22 February 2008).]
Consumer Genetics
While The DNA Network provides a constant stream of quality blogs on the ups and downs, ins and outs of direct-to-consumer, genetic medicine, two caught my attention this month for demonstrating creativity and gumption.
Polls Closed, Myriad Tallies Up and We await Navagenics! Steve Murphy, Gene Sherpas: Personalized Medicine and You. 11 February 2008.
In an informal survey of his readers, Murphy discovers that most think 23andMe is the most likely to be sued first. In assessing the litigious environment, the Sherpa (Murphy's pithy alter-ego) comments: "If I had a law degree … I would bone up on genetics legal precedent, corporate protections and genetic discrimination. If you think a certain ex-candidate for president made a bundle suing OB/Gyns, you haven't seen the beginning of the legal fortune to be made in genomics."
DNA Videos: Genetic Testing on NBC Nightly News. Hsien-Hsien Lei, Eye on DNA. 13 February 2008.
In this post Lei embeds videos from the Robert Bazell NBC Nightly News series "The Truth About DNA". One of these features Stanford's Hank Greely, who expresses his worries about the genetic testing market place. In a follow-up blog post, Bazell laments a "frightening lack of government regulations". After wondering if Greely and Bazell are "easily scared", Lei takes the advice of a genetic counselor (Ellen Matloff) and writes a sample letter for "Johnny" to open a discussion of his genetic test results with his family members. Will his parents be surprised to discover that he blames them for everything? Maybe someone should persuade Johnny's "parents" to write a reply.
Discrimination
Q&A with MDV’s Bill Ericson: On PacBio’s origin, why Gattaca isn’t our future, and throwing out your statins. David P Hamilton, VentureBeat: Life Sciences. 15 February 2008.
In this interview with Bill Ericson of Mohr Davidow Ventures, Hamilton asks: "What about the potential downsides, such as genetic discrimination that could leave many people uninsurable, or even the possibility that society could end up stratified by genetic caste, as in the movie Gattaca?" Ericson responds, in part, "I worried a lot about those negative implications when we started investing, but American society is, I think, mature enough to deal with the information, whether by legislation or via general social norms."
Rewarding Ignorance. Doug Masson, Masson's Blog – A Citizen's Guide to Indiana. 24 February 2008.
Doug Masson was among the many bloggers (including Steve Murphy and Sue Trinidad) responding to Amy Harmon's New York Times article "Insurance Fears Lead Many to Shun DNA Tests" (24 February 2008). After describing how the insurance industry needs a degree of "ignorance" to survive, Masson observes: "as our knowledge of a person’s likely health care profile increases, paying for medical treatment becomes less about managing risk through insurance and more about determining what our obligations might be toward our fellow humans in subsidizing their ability to live and/or remain healthy".
Bipolar Blood Test? Let The Bloodbath Begin. Philip Dawdy, Furious Seasons. 28 February 2008.
Dawdy, a patient, reacts to the latest research news about the search for psychiatric biomarkers. Research at Indiana University School of Medicine has isolated blood markers to identify mood disorders. Lead author, Alexander B. Niculescu III, M.D., Ph.D. (a future guest at our weekly PredictER meeting), hailed the research as "a major step towards bringing psychiatry on par with other medical specialties that have diagnostic tools to measure disease states and the effectiveness of treatments". If, however, a test is developed, Dawdy declares, "I am going nowhere near that test because its results--unless you do the test privately--will follow me the rest of my life and be used to discriminate against me and people like me in insurance (health and life), employment, schools, housing and God knows what all".
Health IT and Medical Records
Of Slelling and Men. Steve Murphy, Gene Sherpas: Personalized Medicine and You. 3 February 2008.
After defining "slelling" and recounting the scandals that have limited the possibility of selling health data without the explicit consent of patients, Murphy cites Emanuel EJ, Wendler D, and Grady C (2000) to summarize how "ethicists feel" about data acquisition in clinical research.
Engineering Grand Challenges – Advancing health informatics. Deepak Singh, bbgm. 19 February 2008.
In reviewing an article published on the National Academy of Engineering website, Deepak Singh notes that the technological challenges of health informatics are inseparable from some common ethical concerns. Singh's notes that "[w]hile the article refers to privacy and security, it does not address the issues of content ownership and data portability". Among the questions the Singh would like to see answered are: "Who owns someones medical data? How does it move from one system to another? What parts can a physician have access to? [And] what are the dangers of a system controlled by the user … [?]"
Google PHR roll-out: how personal will a personal health record be? David Harlow, HealthBlawg. 24 February 2008.
Although any news about Google's developing personal health records platform "Google Health" results in an avalanche of blog posts, David Harlow was among the rare bloggers to recognize and speculate about the medical research potential of these records. In reflecting on the privacy and HIPAA challenges that Google's personal health records may bring, Harlow remarks:
So let's assume the worst: Google will sell ads to the highest bidders for keywords in your PHR (kinda OK so long as there's adequate disclosure up front), will sell aggregated de-identified data for population-based health studies (ditto, but this seems more like a good thing, and is really at the heart of the value of EHRs and PHRs generally -- though the utility depends on how much data really finds its way into the PHR, and how it's organized) and worst of all, will mistakenly convert your PHR into an RSS feed that ends up on every computer in America (eek! . . . but is that worse than dropping a paper record behind a file cabinet and never finding it again?) … Every innovation comes with a set of benefits and burdens.
Politics
One gene, two genes; red genes, blue genes. Jesse Reynolds, Biopolitical Times. 14 February 2008.
Reynolds responds to an article published in New Scientist, "Two tribes: Are your genes left-wing or right-wing?" (2 February 2008). Following a critical assessment of the media coverage and a skeptical review of efforts to study the genetics of political attitudes and behavior, Reynolds identifies a potential "disturbing" social implication for such research: "accepting that genes determine political orientation could cause deepening political apathy … Heck, why bother voting when you could just have your cheek swabbed?"
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