In the Literature: Altruism, the Self and Genetic Research

Ethicists and medical researchers often think about the barriers to participation in research. People want to know exactly what keeps potential participants away from a valuable research project? Likewise, many want to know what could be done to (safely and fairly) lower the barriers to participation in research. The opposite question, however, is equally interesting: Why do people do it? What motivates patients and others to consent to medical research?

Nina Hallowell, et al. examine these questions in the context of cancer research and biobanks in their recent paper “An investigation of patients’ motivations for their participation in genetics-related research” (J Med Ethics. 2010 Jan;36(1):37-45). The authors conducted interviews with 59 patients formerly enrolled in research studies at a regional genetics service (Wessex Clinical Genetics Service, Southampton, UK). After pouring through what must have been a large stack of transcripts, the authors identified three frequently expressed motivations: 1) “Selfish” – subjects expected to benefit from the research by receiving better care or other rewards; 2) Familial altruism – subjects wanted to contribute to efforts that might help future cancer patients (including grandchildren) in their families; and 3) Social altruism – subjects expressed a desire to do something that would benefit society and improve the health of all. After using these categories to evaluate the motivational statements, the authors declined to assert that any single type was a sufficient description of why patients consent to genetic research studies. They write: "these framings were frequently juxtaposed within the interviews, so that, in practice, it was difficult to characterise interviewees’ accounts as either self- or other-oriented". And again: "drawing upon any one motive to account for one’s behaviour in this context is not sufficient, for each motive would appear to impact upon, alter and modify others in a recursive or dynamic fashion".

They also provide a graphic to help us visualize the inter-related motivators in the genetic research participation engine:


My thoughts:

While I do not doubt that motivations are multi-layered and that a single individual may be motivated simultaneously by personal need and social altruism, I think the authors decided to down play the importance of the "personal framing" (or “selfish reasons”) in subjects’ decisions to consent to genetic research. In fact, the paper reports: "The majority of interviewees, like P124, offered personally motivated reasons for their research participation at some point in their interview". The importance of self-centered motivations is also clear in the graphic above. In other words, while it may be difficult to untangle these motivations, the gears might stop turning altogether if one were to remove "personal framing". I do not think the authors would disagree with me (and if they read this post, they are more than welcome to comment); perhaps the authors do not want to lose the point that altruism cannot be a stand-alone motivator. In fact, the discussion ends with a compelling statement:

Such observations suggest that we may need to rethink the concept of altruism … the “moral character of research participation”. Also, as we noted earlier, we need to recognise that when it comes to accounting for research participation we can no longer regard altruism and selfishness as incompatible or oppositional concepts. Indeed, it would appear that research participation is experienced as a more ethically contentious activity than has heretofore been assumed.

Reference:

Hallowell N, Cooke S, Crawford G, Lucassen A, Parker M, Snowdon C. An investigation of patients' motivations for their participation in genetics-related research. J Med Ethics. 2010 Jan;36(1):37-45. PubMed PMID: 20026692.

Related:

Dixon-Woods M, Tarrant C. Why do people cooperate with medical research? Findings from three studies. Soc Sci Med. 2009 Jun;68(12):2215-22. Epub 2009 Apr 24. PubMed PMID: 19394741.

Geller G, Doksum T, Bernhardt BA, Metz SA. Participation in breast cancer susceptibility testing protocols: influence of recruitment source, altruism, and family involvement on women's decisions. Cancer Epidemiol Biomarkers Prev. 1999 Apr;8(4 Pt 2):377-83. PubMed PMID: 10207643.

Treloar SA, Morley KI, Taylor SD, Hall WD. Why do they do it? A pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis. Community Genet. 2007;10(2):61-71. PubMed PMID: 17380055.

Other Recent Predictive Health Ethics Articles – PubMed, Nov 2009 -Jan 2010

-- J.O.

Translational Medicine, Cancer and Biobanks: Predictive Health Ethics Events at IU

On December 1-2, 2008 the Indiana Health Industry Forum will present From Basics to Bench to Bedside: Emerging Trends and New Developments in Cancer Discovery, Diagnosis and Treatment. The purpose of this summit, the third in a series, is to examine the state of life sciences research in Indiana with a diverse range of individuals and institutions interested in cancer research, diagnosis and treatment. Of particular interest to those keen on predictive health is a panel discussion on December 2nd at 1:00 PM entitled “Tailored Therapeutics and Implications for Regulatory Endpoints.” Panelists include Jerome Yates, MD, MPH, National Vice President for Research at the American Cancer Society, Eric Meslin, PhD, Director of the Indiana University Center for Bioethics (IUCB), Lawrence Lesko, PhD, FCP, Director of the Office of Clinical Pharmacology at the FDA’s Center for Drug Evaluation and Research, and Silvana Borges, MD, Medical Officer for the Genomics Group of the same.
   
On December 4, 2008 the Indiana Clinical and Translational Sciences Institute and IU Simon Cancer Center are hosting a symposium entitled Biorepositories: Scientific, Technical and Ethical Considerations at the Cancer Research Institute on the Indiana University – Purdue University Indianapolis campus. IUCB Faculty Investigator Jennifer Girod, JD, PhD, RN, will be giving a talk on “Ethical and Legal Considerations in Biobanking.” Other presentations will address issues specific to the storage of biospecimens, the extraction and processing of RNA and DNA, tissue procurement, the impact of storage conditions on DNA, and the benefits of biorepositories to research.

On December 8- 9, 2008 the Indiana University School of Medicine will be holding an event that addresses the FDA in the 21st Century: Issues and Their Impact on Medical Technology. This event, which will focus on the future role of the FDA in a changing market, is part of the medical school’s Medical Technology Leadership Forum [Flyer - PDF]. IUCB Director Eric Meslin, PhD, will be moderating a morning session on December 9th specific to ethics and conflicts of interest with Ora Pescovitz, MD, President and CEO of Riley Hospital for Children and Elazar Edelman, MD, PhD, Director of the Harvard-MIT Biomedical Engineering Center. – Amy Lewis Gilbert

Racing for the Biobank

Here in Indianapolis the city is preparing for one of the biggest annual gathering of runners in the region. On April 19th thousands of runners and walkers will converge on the Indiana University-Purdue University, Indianapolis (IUPUI) campus for the The 2008 Komen Indianapolis Race for the Cure. While there will be plenty of people milling around after the 5k race and walk, many of the participants will also donate DNA and blood to a predictive health research study. The Susan G. Komen for the Cure Tissue Bank at the IU Simon Cancer Center will collect blood samples for the biobank from both women with and without a high risk for breast cancer. In a press release from the Indiana University School of Medicine, Dr. Susan Clare, a co-principal investigator of the tissue bank, notes that:

Collecting blood from women who have not had breast cancer provides an opportunity for these donors to give a unique gift to science …. Even though these donors will not benefit directly from their donation of blood, they are providing an invaluable resource to enable research that will benefit generations to come.

The upbeat tone in this quotation is nurtured by more than a keen eye for good public relations—past tissue bank drives at the race have been a wild success. So, is this a good way to build a predictive health biobank? Would similar outreach methods work for other diseases? How about a 5k race to cure for diabetes or schizophrenia? Would runners turn out in equal numbers? Would participants be as willing to donate after the race? Undoubtedly the organizers of this tissue bank and the Komen Race for the Cure have done an excellent job of advocating for this research, but is there something about breast cancer or about our culture that might (perhaps disproportionately) encourage potential research participants to join the cause?

The Research Advocacy Network

Yesterday (Feb. 18), Elda Railey and Mary Lou Smith from the Research Advocacy Network (RAN) addressed the weekly PredictER meeting at the IU Center for Bioethics. RAN facilitates cooperation between research advocates (often disease survivors) and researchers. With access to the energy and resourcefulness of patient and research advocates, RAN accelerates the translation of clinical research. Researchers receive assistance with participant recruitment, public engagement, and patient and clinician education. In turn research advocates and patients have the pleasure of making a real difference in the progress of biomedical science, while also ensuring enhanced patient care in the future.

For readers interested in patient and research participant education, RAN provides print and electronic resources. Including a booklet for patients on the importance of tissue donation, a tutorial for advocates on the clinical trials process, and a training manual for advocates interested in genetic and genomic oncology research.

Also a guest at the PredictER meeting, Cynthia Burkhardt, a research site coordinator, discussed RAN’s collaboration with the Hoosier Oncology Group.

Visit the Research Advocacy Network website to download these and other RAN publications:

“Why is it important for me to consider donating my tissue for research: A booklet for prospective donors”. Research Advocacy Network, 2005. 12p.

Perlmutter, J. Understanding Clinical Trial Design: A Tutorial for Research Advocates.

Genomics in Cancer: An Advocate’s Guide and Training Manual. [Forward by Francis S. Collins, MD, PhD.] Research Advocacy Network, 120p. Research Advocacy Network, 52p.

Next at PredictER:

CANCELED - February 25 – 3:00 pm: Anna Maria Storniolo, M.D., (Director, Catherine Peachey Breast Cancer Prevention Program) will share the progress of the Mary Ellen Tissue Bank.

March 3 - 3:00 pm: Andrew J. Saykin, M.D., (Director, IU Center for Neuroimaging, IU School of Medicine): Neuroimaging, Cognition and Genetics in the Early Detection of Alzheimer's Disease.

If you are in the Indianapolis area and would like to attend, visit the Indiana University Center for Bioethics website for more information. - J.O.

Predicting a New Disease: Pathological Consumption of Genetic Information

The current issue of the New England Journal of Medicine (10 January 2008; PMID: 18184955) contains a cleverly titled article “Letting the Genome out of the Bottle – Will We Get Our Wish?" The article, which explores the new phenomena of commercialized personal genome analysis through genetic profile tests capable of identifying several hundred thousand variations in any one genome, has drawn the attention of several astute bloggers, including: Myles Axton of Free Association, Blaine Bettinger of The Genetic Genealogist, Hsien-Hsien Lei of Eye on DNA, and Steve Murphy of Gene Sherpas. The general conclusion of the NEJM authors is that perhaps a person may get their wish, but the clinician certainly won’t. Why is that? Because the predictive value of many of the variations identified by the tests is questioned as is the utility of the information itself, i.e. what will the patient do with the information? While both of these arguments are accurate, they need to be tempered with common sense and a degree of humility rarely found when scientists address general society.

Beginning with the first point, the predictive value of these tests is limited. Lead author Dr. David Hunter develops this point in a US News and World Report interview with Nancy Shute (Why Not to Buy a Scan of Your Genome, 9 January 2008). Hunter notes that the predictive value of many of the genes or single nucleotide polymorphisms (SNP’s) found in these genetic profiles pales in comparison to the predictive value of tried and true genetic tests for specific genes like BRCA 1 and 2. To be sure, he is correct, but interestingly the predictive value of the BRCA gene is being called into question this month as well. A large population-based case-control study published in the Journal of the American Medical Association (Begg CB, et al. Variation of Breast Cancer Risk Among BRCA1/2 Carriers. JAMA. 2008;299(2):194-201. PMID: 18182601) suggests the BRCA 1 and/or 2 gene alone may not be as predictive as once thought, and that a variety of other genes may explain the strong familial clustering of breast cancer. What this means is that the more we know about genetics, the more we recognize the limits of our knowledge. How then can adding personal genome profiles adversely affect this pool of knowledge?

Moving now to the second point: the clinical utility of general genome profiles is questionable. Certainly this is the case. Still, the authors need to keep "personal" aspects of these profiles in mind. This is not a test marketed to health professionals to guide treatment; it is a test marketed to guide lifestyle, a type of guidance which most physicians are admittedly poor at providing for their patients anyway. Further still, the lifestyle changes dictated by carriers of the BRCA gene may be very dramatic—possible removal of both breasts and ovaries; contrast these to the lifestyle changes encouraged by a personal genome scan indicating an increased risk for heart disease—increased exercise and proper diet.

In sum, Dr. Hunter and his colleagues are right to raise their concerns about these tests: the tests have limited capability, unknown utility, and are expensive. Still, the capability of any medical test can only be magnified by an increase in data. Furthermore, an unknown clinical utility does not mean that a person cannot derive some utility from knowing their own genome profiles. If this were the case, why would they purchase the test at all? Perhaps Dr. Hunter’s lament is in part that the human genome, once the bastion of modern orthodox medical science, now will be shared with alternative medicine in a very real and technical way. Making this point clear is what is necessary, not admonishing patients on how to spend their money. - Patrick Barrett

Predictive Health Legislative Update: GINA, HIPSA and more ...

If you are interested in U.S. legislative developments that may impact the progress of predictive health and genetic research, you've probably heard of The Genetic Information Nondiscrimination Act (GINA). If enacted, GINA (S.358) would "prohibit discrimination on the basis of genetic information with respect to health insurance and employment". Although widely supported, GINA's progress has been stalled by the opposition of one legislator, Sen. Coburn [OK]. Coburn has placed a block on the bill and offers an evolving account for his opposition. As reported in Wired, November 17, 2007, Coburn objects to "the possibility that an employer who provides health insurance for its workers could be sued both as an insurer and as an employer". The bill's sponsor, Rep. Slaughter (NY), dismissed the latest justification for Coburn's hold as "creative".

Although GINA has received the most attention from the press and legislators (and rightly so, as it is only one roadblock away from a vote) other bills relevant to predictive health research have also been introduced. Like GINA, two of these were written with the intent to enhance the privacy of medical records. Both of these are currently waiting for review in the Senate's Committee on Health, Education, Labor, and Pensions:

S.1455 National Health Information Technology and Privacy Advancement Act of 2007
Introduced May 23, 2007, this bill aims "to provide for the establishment of a health information technology and privacy system". The bill's sponsor, Sen. Sheldon Whitehouse [RI], and four cosponsors ask for creation of the "Office of the National Coordinator for Health Information Technology". Among other things, this new "nonprofit national health information technology and privacy corporation" would identify rules for the research use of non-identifiable health care data.

S.1814 Health Information Privacy and Security Act (HIPSA)
HIPSA, reviewed here at PredictER Blog, was introduced by Sen. Leahy [VT] on July 18, 2007. While intending, in part, to "promote the use of non-identifiable information for health research", the bill strengthens personal privacy protections. If passed, individuals would be permitted to inspect a copy of this information and would be notified of security breaches. HIPSA also requires the Health and Human Services Secretary to provide "model written authorization for the disclosure" of health information and establishes criminal and civil penalties for intentional violations.

Readers interested in the development of biobanks and genetic databases for pediatric research, will want to follow the progress of a third bill: S.911 Conquer Childhood Cancer Act of 2007. This bill amends the Public Health Service Act to establish a grant mechanism to sponsor the creation of a national, population-based database for pediatric cancer research—the Childhood Cancer Research Network. The Act, introduced by Sen. Reed [RI], would also provide grants for Research Fellowships and for the public awareness and communication efforts of relevant advocacy organizations. This bill was recently reviewed by the Senate's Committee on Health, Education, Labor, and Pensions and placed on the Senate Legislative Calendar (see General Orders, No. 535). A version of the bill is also making its way through the House of Representatives; H.R.1553 is sponsored by Rep. Deborah Pryce of Ohio and was referred to the House Subcommittee on Health on March 16, 2007. - J.O.

Subscribe to PredictER Blog for updates on these and other legislative developments.

Predictive Health Research: What Isn't It?

If you're a regular reader of this blog, if you receive PredictER News Brief, if you have attended any PredictER event; you've probably encountered definitions of "predictive health research". But, let's pretend you're not a regular PredictER Blog reader; imagine that! You might wonder … What's the big deal; aren't all medical professionals predicting health outcomes? Isn't most medical research conducted with the hope of better predicting health outcomes? Well, you're not alone. These are questions I regularly entertain when updating PredictER's shared headlines (see the panel on the right) or when adding items to PredictER's del.icio.us and CiteULike accounts. In fact, two recent news items seemed to be begging to stretch the scope beyond the typically featured genetic and neuroimaging research. First, on the 30^th of October, The Washington Post reported "Quality of Life Predicts Lung Cancer Survival". The story relays the news of recent cancer research findings and quotes the lead author, Dr. Nicos Nicolaou of the Fox Chase Cancer Center in Philadelphia:

"In the past, we've considered the stage of disease or tumor size along with other empirical data to predict how long a patient will survive, but now we know quality of life is a critical factor in determining survival".

The second story, also relaying research news on "survival" factors, appeared Wednesday in MedPage Today: "Mathematical Index Simplifies Survival Prediction After Liver Grafts". In the November 7^th report, Judith Groch writes:

The researchers [Michael L. Volk and colleagues at the University of Michigan] said that the modified comorbidity index predicted liver transplant survival as well or better than other available models that typically use recipient characteristics such as age, race, BMI, and etiology of liver disease. … Until now, "we have considered comorbidities in an informal way when deciding whether to put patients on the list for transplant, but nobody has ever quantified the impact of comorbidities on post-transplant survival," Dr. Volk said.

Sounds "predictive" to me, but is it relevant to PredictER? I can't say "no", but I have to admit that PredictER Blog has focused on research emphasizing long-term prediction … tests and methods revealing disease years (if not decades) prior to the onset of symptoms. This "predictive" research often requires the latest developments in research knowledge and technology; it also introduces a new emphasis on some familiar ethical and social issues. When research requires biobanks and databases for the collection of tissue samples and genetic data for potentially long-term and unexpected use, the task of assuring subject privacy, dignity, and autonomy faces new challenges. These challenges are multiplied when biobanks are coupled with longitudinal access to personal medical records. Thus, while reserving the opportunity to be inclusive, the interests of PredictER Blog can be distinguished from the "predictive" aspects of all biomedical research (exemplified by the Nicolaou and Volk studies) by a measure of degrees. PredictER Blog is interested in research aims marked by dramatic increase in the power and accuracy of health "prediction", the requisite ethical protections, and the much anticipated benefits ... a more personal "personalized medicine".

Related research:

Volk ML, Hernandez JC, Lok AS, Marrero JA. 2007. Modified Charlson Comorbidity Index for predicting survival after liver transplantation. Liver Transplantation. Volume 13, Issue 11 , Pages 1515 - 1520. [doi: 10.1002/lt.21172]

Nicolaou N, Moughan J, Sarna L, Langer C, Werner-Wasik M, Komaki R, Machtay M, Wasserman T, Bruner D, Movsas B. 2007. Quality of Life (QOL) Supercedes the Classic Predictors of Survival in Locally Advanced Non-Small Cell Lung Cancer (NSCLC): An Analysis of Radiation Therapy Oncology Group (RTOG) 9801. International Journal of Radiation Oncology, Biology, Physics. Volume 69, Issue 3, Pages S58-S59. [doi:10.1016/j.ijrobp.2007.07.107]

Medical Records and the VA: Cancer, Laptops, Babies and Bath Water

In Wednesday's New York Times, Gina Kolata reports on the Veteran Administration's new national directive which requires states to agree to conditions prior to acquiring cancer patients’ personal information and health records. State laws often require hospitals to submit data, but these laws do not apply to federal agencies like the VA. This policy will result in less reliable statistics on the prevalence of cancer and will also chill the progress of state administered cancer research. On the other hand, the protection of patient privacy will be enhanced. The VA'S chief of research and development office, Dr. Joel Kupersmith, noted a "dynamic tension between patient privacy and the desire to use patients’ private information to do research", but stressed that the "paramount issue for us is the protection of patient privacy and the protection of patient information."

The impact of these new restrictions on predictive health cancer research will be especially felt in 17 regions that are part of the National Cancer Institute’s network. According to Kolata, these regions use personal health records provided by hospitals to investigate "cancer risk factors and outcomes" and to "provide data to academic researchers who are doing studies and need to interview patients or need genetic information."While a few states have agreed to sign the directive, many others are holding out--most notably, the state California. States complain that the directives place too many restrictions on the use of the data and that complying with these conditions is both expensive and impractical. Tina Clarke, an epidemiologist at the Northern California Cancer Center estimates that the directive will add over a year to the ethics review process. Clarke added, "Privacy concerns are serious … [b]ut at the same time, this is a baby with the bath water problem." -- J.O.

PredictER Notes:

1. In the next few weeks, as the public begins to digest this news, many cancer patients will be surprised to discover that their medical records and personal information are available for research. Will this story reduce public support and willingness to participate in predictive health research?

2. As Kolata reports, the VA'S chief of research and development, noted that "the department was especially sensitive to privacy concerns in light of incidents like the theft by teenagers last year of a laptop computer containing personal information on 26.5 million veterans." The new directive does not, of course, provide information and privacy protections that would have prevented the theft of a laptop. Will the VA's new policy truly provide the information security and privacy protections that patients expect?

Related document:

VHA DIRECTIVE 2007-023 (pdf) - RELEASE OF VA DATA TO STATE CENTRAL CANCER REGISTRIES. 15 August 2007. Department of Veterans Affairs -Veterans Health Administration.

Cancer Patients' Attitudes -- New Predictive Health Ethics Research

Bioethics researchers Paul Helft of the Fairbanks Center for Medical Ethics, and Eric Meslin of the Indiana University Center for Bioethics publish paper on patient attitudes towards biobanks - Biomedical research, social science and ethics scholars have been working for over a decade to understand attitudes toward biobanking; "Cancer Patients' Attitudes Toward Future Research Uses of Stored Human Biological Materials" continues the progress of this research. In response to a request for a comment for this blog, Helft noted that a better understanding of attitudes toward biobanking will help to establish: "Policy and best practices for informed consent for future, unspecified research". This newly published research, conducted by Helft, Meslin, and others, provides valuable information to anyone interested in recruiting research participants for, or in shaping the development of, human biobanks. "Our study", Helft remarked, "was one of the few which have assessed the attitudes of patients who actually gave tissue to a biobank under these conditions". The authors found that a significant minority placed restraints on or had reservations about unrestricted future research on their stored tissue. "In developing policy and best practices", said Helft, "we need to understand this group’s attitudes better". - J.O.


Citation:

Helft PR, Champion VL, Eckles R, Johnson CS, Meslin EM. Cancer Patients' Attitudes Toward Future Research Uses of Stored Human Biological Materials. JERHRE. 2007; Sept;2(3):15-22.

Abstract: THE POLICY DEBATE CONCERNING INFORMED consent for future, unspecified research of stored human biological materials (HBM) would benefit from an understanding of the attitudes of individuals who contribute tissue specimens to HBM repositories. Cancer patients who contributed leftover tissue to the Indiana University Cancer Center Tissue Bank under such conditions were recruited for a mail survey study of their attitudes. Our findings suggest that a clear majority of subjects would permit unlimited future research on stored HBMs without re-contact and reconsent, and a significant minority appear to desire ongoing control over future research uses of their tissue. These differences merit further investigation and suggest that a policy of blanket consent for all future, unspecified research would be premature.

Source: http://caliber.ucpress.net/doi/abs/10.1525/jer.2007.2.3.15

[Note: PredictER Blog will announce more research from on attitudes toward predictive health research in the near future.]

Genetics and Predictive Health in the News, July 2-9, 2007

Colorectal and Prostate Cancer

Study identifies a common genetic risk factor for colorectal and prostate cancer. July 8, 2007. University of Southern California. Eurekalert: http://www.eurekalert.org/pub_releases/2007-07/uosc-sia070607.php
"[O]ne of seven genetic risk factors previously identified as increasing the probability of developing prostate cancer also increases the probability of developing colorectal cancer".

U-M, Israeli scientists report major advance in search for genes associated with colon cancer. July 8, 2007. University of Michigan Health System. Eurekalert: http://www.eurekalert.org/pub_releases/2007-07/uomh-uis070307.php
"In a paper to be published in the July issue of Cancer Biology and Therapy, the international research team reports finding a significant link between genetic variation in a single region of human chromosome 8 and the risk of colorectal cancer. . . . The researchers compared the genetic makeup and family history of more than 1,800 colorectal cancer patients with that of 1,900 healthy people with the same breakdown of age, gender and ethnicity - either Ashkenazi Jew, Sephardic Jew or Arab/non-Jew".

Genetic Testing

Publication Announcement: Comparison of State Laws for Direct-to-Consumer Testing. July 06, 2007. The Genetics and Public Policy Center. DNApolicy.org: http://www.dnapolicy.org/news.release.php?action=detail&pressrelease_id=81
"Despite increased attention to the potential of direct-to-consumer (DTC) genetic tests to mislead consumers or waste their money – including a Federal Trade Commission warning in July 2006 – 26 states and the District of Columbia permit DTC laboratory testing without restriction, according to a new survey by the Genetics and Public Policy Center. .... [O]nly 13 states prohibit DTC testing, while 11 permit it only for specified categories of tests, which tend to exclude genetic tests".

Translational Research

$2 million Komen Award will fund research to reduce risk of breast cancer. July 5, 2007. Georgetown University Medical Center. Eurekalert: http://www.eurekalert.org/pub_releases/2007-07/gumc-mk070507.php
"Now that screening for genes that predispose a woman to breast cancer is routinely available, women at an increased risk are looking for ways to keep themselves healthy. Insoo Bae, PhD, a junior faculty member of the Lombardi Comprehensive Cancer Center at Georgetown University Medical Center received a $2 million research award from Susan G. Komen for the Cure . . . .

Bae . . . has developed a new methodology for studying the interaction between environmental carcinogens and genetic risk for breast cancer".

Asthma

Gene linked to childhood asthma: Scientists have identified a gene that is strongly associated with an increased risk of childhood asthma. July 4, 2007. BBC News: http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/6261876.stm
"Studying more than 2,000 children, they pinpointed a gene called ORMDL3, which was found at higher levels in the blood cells of children with asthma. . . . Carrying a specific variant of this gene may increase the risk of developing asthma by up to 70%".

Reproductive Technologies

Pre-implantation genetic screening reduces both ongoing pregnancy and live birth rates in over 35s. European Society for Human Reproduction and Embryology, July 4, 2007. Eurekalert: http://www.eurekalert.org/pub_releases/2007-07/esfh-pgs070407.php
"Lyon, France: Preimplantation genetic screening (PGS), often considered to hold out the best chance for older women undergoing IVF to have a pregnancy and birth, does not increase on-going pregnancy or live birth rates ...."

Genomics

NIH Roadmap leads to genomics. Stewart, A. July 3, 2007. Newsletter, PHG Foundation:
http://www.phgfoundation.org/news/month/07/2007/#story_3497
"As part of its Roadmap strategy to tackle major opportunities and gaps in biomedical research, the US National Institutes of Health has published its latest list of priority research areas that cut across all 27 of its constituent institutes and centres. There is a clear focus on genomics . . . ."

W.U. wins right to keep cancer research samples

From St. Louis Post, Robert Patrick, June 21, 2007.

A three-judge panel of the 8th U.S. Court of Appeals in St. Louis upheld U.S. District Judge Stephen Limbaugh's ruling last year that thousands of "genito-urinary" samples donated to Washington University's GU Biorepository could not be transferred. ...........
...............................
Dr. Larry Shapiro, dean of the Washington University School of Medicine, said the decision was of "national import," and would allow other institutions to move forward with creating their own repositories. The American Cancer Society and a number of universities had filed legal briefs in support.