Virtual Bookshelf Resources

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Articles below marked with an * require that you are using a campus server or logging in through the Berkeley proxy (or another library service. Check your local library to see if they allow access to many of these journals).

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Books

Collins, Francis S. (2010). The Language of Life: DNA and the Revolution in Personalized Medicine. New York: Harper Collins.
This book, by the leader of the US arm of the International Human Genome Project and present Director of the National Institutes of Health presents a lucid and authoritative explanation of some of the surprises and important information that is coming from the study of individual human genome sequences. The book also presents a balanced discussion of the present state of direct-to-consumer genetic tests, and provides a peak into the technologies inspired by studies of human genetic variation that may affect our lives in the coming years.
Come to Looking for the Good News in Your Genome, a talk by Jasper Rine, September 13, 2010 at 7:30 pm in Wheeler Auditorium for a chance to win a copy of this book!

Weizmann, T. & Berger, A. C. (2010) The Value of Genetic and Genomic Technologies, Workshop Summary. National Academies Press.
Available for download at http://www.nap.edu/catalog.php?record_id=12947#description
“Knowing one's genetic disposition to a variety of diseases, including common chronic diseases, can benefit both the individual and society at large. The IOM's Roundtable on Translating Genomic-Based Research for Health held a workshop on March 22, 2010, to bring together diverse perspectives on the value of genetic testing, and to discuss its use in clinical practice.”

Skloot, H. (2010). The Immortal Life of Henrietta Lacks. New York: Crown Publishers.
Review from Publishers Weekly: Science journalist Skloot makes a remarkable debut with this multilayered story about faith, science, journalism, and grace. It is also a tale of medical wonders and medical arrogance, racism, poverty and the bond that grows, sometimes painfully, between two very different women—Skloot and Deborah Lacks—sharing an obsession to learn about Deborah's mother, Henrietta, and her magical, immortal cells. Henrietta Lacks was a 31-year-old black mother of five in Baltimore when she died of cervical cancer in 1951. Without her knowledge, doctors treating her at Johns Hopkins took tissue samples from her cervix for research. They spawned the first viable, indeed miraculously productive, cell line—known as HeLa. These cells have aided in medical discoveries from the polio vaccine to AIDS treatments. What Skloot so poignantly portrays is the devastating impact Henrietta's death and the eventual importance of her cells had on her husband and children.

Fiction

Indriðason, A. (2000). Jar City: A Reykjavik Thriller. New York: St. Martin's Press.
From Publishers Weekly: When a lone septuagenarian is murdered in his apartment in the Nordurmýri district of Reykjavík, detective inspector Erlendur Sveinsson is called in, along with partner Sigurdur Óli and female colleague Elínborg. Everyone is related to everyone else in Iceland and refer to one another by first name, even formally. Erlendur is about 50, long divorced, with two kids in varying degrees of drug addiction. The victim, a man called Holberg, turns out to have been a nasty piece of work, and Erlendur is disgusted by the series of rapes Holberg apparently committed. The rapes and the deaths of a number of young women may be connected, and the search brings Erlendur to the forensic lab, whose old "jar city," since disbanded, held research organs. Meanwhile, Erlendur's daughter, Eva Lind, is pregnant and still using; she flits in and out of his life angrily, but may be crying out for help. Reykjavík's physicality, and the fact that crimes are relatively rare in Iceland, gives things a defamiliarizing cast.

Powers, R. (2009). Generosity: An Enhancement. New York: Farrar, Straus and Giroux.
From the Publisher: What will happen to life when science identifies the genetic basis of happiness? Who will own the patent? Do we dare revise our own temperaments? Funny, fast, and magical, Generosity celebrates both science and the freed imagination. In his most exuberant book yet, Richard Powers asks us to consider the big questions facing humankind as we begin to rewrite our own existence.

Information about the genes being tested for this project

Folic Acid

Linus Pauling Institute , Micronutrient Information Center, Folic Acid
http://lpi.oregonstate.edu/infocenter/vitamins/fa/
This page will give you an overview of folic acid’s function and the effects of folic acid deficiency.

Wikipedia – Folic Acid - http://en.wikipedia.org/wiki/Folic_acid
The Wikipedia overview of Folic Acid.

Alcohol Tolerance

Wikipedia - alcohol dehydrogenase - http://en.wikipedia.org/wiki/Alcohol_dehydrogenase
The Wikipedia overview of alcohol dehydrogenase.

Wikipedia - alcohol flush reaction - http://en.wikipedia.org/wiki/Alcohol_flush_reaction
The Wikipedia overview of the alcohol flush reaction, caused by a mutated form of ALDH2.

Bradley, David. Hangover Culprit Found. Reactive Chemistry Blog.
http://www.reactivereports.com/chemistry-blog/hangover-culprit-found.html
A discussion of ALDH2’s involvement in hangovers.

*Muramatsu, T., Zu-Cheng, W., Yi-Ru, F., Kou-Bao, H. et al. (1995). Alcohol and aldehyde dehydrogenase genotypes and driking behavior of Chinese living in Shanghai. Human Genetics 96: 151-154.
http://www.springerlink.com/content/h726731220g73321/?p=11617b668d344d7a9132c60d7098867b&pi=3
The results of this study support the hypothesis that “drinking behavior is greatly influenced by the individual's gentoypes of alcohol-metabolizing enzymes, and the risk of becoming alcoholic is proportionate with the ethanol consumption of the individual.”

Wade, N. Adventures in very recent evolution. New York Times 7/19/2010
http://www.nytimes.com/2010/07/20/science/20adapt.html
The alcohol flush reaction may be one example of recent human evolution.

Lactose Intolerance

Lactose Intolerance Wiki
http://en.wikipedia.org/wiki/Lactose_intolerance
The Wikipedia overview of alcohol lactose intolerance.

Hollox, E. (2005). Evolutionary genetics: Genetics of lactase persistence – fresh lessons in the history of milk drinking. European Journal of Human Genetics 13: 267-269.
http://www.nature.com/ejhg/journal/v13/n3/full/5201297a.html
Lactase persistence – that is, the lack of lactose intolerance prevalent especially in Northern European communities, is a more recent adaptation. Lactose intolerance is the “ancestral state” of humans worldwide.

Randerson, James (2002). Genetic basis of lactose intolerance revealed. New Scientist.
http://www.newscientist.com/article/dn1787-genetic-basis-for-lactose-intolerance-revealed.html
Discusses the discovery of a genetic basis for lactose intolerance. Also touches on regional
variations for the presence of lactose intolerance

Information about the ethical, legal, social, and political issues

Websites and Series

Berkeley Blogs
http://blogs.berkeley.edu/category/science/20100712/
See blogs written by members of the UC Berkeley community. The topic is “What do you want to learn from your genes, what do you not want to know, how would you use the information, and who would you tell about it?”

Human Genome Project Information: Ethical, Legal and Social Issues.
http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml
“The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) devoted 3% to 5% of their annual Human Genome Project (HGP) budgets toward studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information. This represents the world's largest bioethics program, which has become a model for ELSI programs around the world.” This website contains many articles discussing the Ethical, Legal, and Social Issues surrounding genetic testing, as well as links to information about the Human Genome Project in general.

Your Genes, Your Choices by Catherine Baker
http://www.ornl.gov/sci/techresources/Human_Genome/publicat/genechoice/index.html
This book (available as a free pdf from the website) “describes the Human Genome Project, the science behind it, and the ethical, legal, and social issues that are raised by the project. This book was written as part of the Science + Literacy for Health project of the American Association for the Advancement of Science and funded by the U.S. Department of Energy.

NY Times: The DNA Age by Amy Harmon
http://topics.nytimes.com/top/news/national/series/dnaage/index.html
This is a Pulitzer-Prize winning series of 16 articles “exploring the impact of new genetic technology on American Life.” It was published in the New York Times in 2008 and covers a range of issues having to do with how genetic testing can affect real people.
The nytimes site may require free registration to access these articles.

The Economist’s Special Report: Human Genome
http://www.economist.com/node/16349358?story_id=16349358
This multi-part special report discusses the human genome project from several angles, discussing the project itself, the future for genomic medicine, personalized medicine, and advances in genetics outside the US and outside humans. This link is to the first article in the series, for the others, scroll partly down the page to the “In This Special Report” sidebar.

Personal Genetics Education Project: Wu Lab, Harvard University
http://genepath.med.harvard.edu/WuLab/pgEd/
“Widespread, inexpensive individual genome sequences are on the horizon. Many believe the cost of sequencing a human genome could be approximately $1,000 (US) in the next one to five years, making it possible for genome sequences to play a routine role in health care. Why would someone want to get their genome sequenced? How does it work? Beyond the applications in the field of medicine, how might personal sequencing affect other areas of your life, and society as a whole? pgEd aims to get people talking about the fast-approaching world of personal genetics. Technology often arrives before we have the chance to fully prepare for the opportunities and challenges that come with it.”

Individual Articles

*Altman, R. B. (2009). Direct-to-consumer genetic testing: failure is not an option. Clinical Pharmacology & Theraputics 86: 15-17
http://www.nature.com/clpt/journal/v86/n1/full/clpt200963a.html
Abstract: Direct-to-consumer genetic testing is an unavoidable consequence of our ability to cheaply and accurately measure the genome. Some are troubled by the loss of control over how and when this information is disclosed to individuals, but it is difficult to imagine any way to prevent the wide availability of these data. Therefore, the key challenge is to set up social, educational, and technical means to support individuals who have access to their genome.

*Bolnick, D. A., Fullwiley, D., Duster, T. et al. (2007). The science and business of genetic ancestry testing. Science 318: 399-400
http://www.sciencemag.org/cgi/content/full/318/5849/399
Abstract: At least two dozen companies now market "genetic ancestry tests" to help consumers reconstruct their family histories and determine the geographic origins of their ancestors. More than 460,000 people have purchased these tests over the past 6 years, and public interest is still skyrocketing. Some scientists support this enterprise because it makes genetics accessible and relevant; others view it with indifference, seeing the tests as merely "recreational." However, both scientists and consumers should approach genetic ancestry testing with caution because (i) the tests can have a profound impact on individuals and communities, (ii) the assumptions and limitations of these tests make them less informative than many realize, and (iii) commercialization has led to misleading practices that reinforce misconceptions.

*Burgess, M. M. (2001). Beyond consent: ethical and social issues in genetic testing. Nature Reviews Genetics 2: 147-151.
http://www.nature.com/nrg/journal/v2/n2/full/nrg0201_147a.html
Abstract: Informed consent is a vital ethical doctrine in clinical medicine and, through genetic counseling, is being applied to genetic testing. But genetic testing raises issues that transcend the traditional concept of informed consent. Genetic tests are adopted without demonstrable clinical benefit, and the consequences of testing can reach beyond the individual to their families and communities. Understanding the social and cultural context of genetic testing will lead to more informed discussion and debate on these issues.

Goetz, T. (2010). Sergey Brin’s search for a Parkinson’s Cure. Wired July 2010.
http://www.wired.com/magazine/2010/06/ff_sergeys_search/all/1
Sergey Brin – one of the founders of Google – has tested positive for a genetic mutation that has been associated with higher rates of Parkinson’s disease. In addition to changing his lifestyle, he has contributed over $50 million to Parkinson’s research, and has attempted to change the way some of this research is done. People are discovering that learning about a predisposition to an illness may not be “toxic knowledge,” but may in fact lead people to healthier lifestyles, instead of distress.

*Feero, W. G., Guttmacher, A .E., & Collins, F. S. (2010). Genomic Medicine – An Updated Primer. New England Journal of Medicine 362: 2001-2011
http://content.nejm.org/cgi/content/full/362/21/2001
“Remarkable advances have been made in understanding the human genome's contribution to health and disease since the first Genomic Medicine series was launched…. Completion of the Human Genome Project in 2003 was a major driver for the current period of biomedical discovery, and the pace continues to accelerate. This project spurred the development of innovations with extraordinary benefits. Initially, clinically useful discoveries derived from the Human Genome Project yielded improvements in "genetic medicine" — that is, the use of knowledge about single genes to improve the diagnosis and treatment of single-gene disorders. However, our increased understanding of the interactions between the entire genome and nongenomic factors that result in health and disease is paving the way for an era of "genomic medicine," in which new diagnostic and therapeutic approaches to common multifactorial conditions are emerging.”

Hamburg, M. A. & Collins, F. S. (2010). The path to personalized medicine. New England Journal of Medicine, online edition June 15,2010.
http://content.nejm.org/cgi/content/full/NEJMp1006304?resourcetype=HWCIT
“Major investments in basic science have created an opportunity for significant progress in clinical medicine. Researchers have discovered hundreds of genes that harbor variations contributing to human illness, identified genetic variability in patients’ responses to dozens of treatments, and begun to target the molecular causes of some diseases. In addition, scientists are developing and using diagnostic tests based on genetics or other molecular mechanisms to better predict patients’ responses to targeted therapy. “ However, obstacles in both the scientific realm and the policy realm make achieving these goals more difficult.

Jeffords, J. M. & Daschle, T. (2001). Political issues in the Genome Era. Science 291: 1249-1251
http://www.sciencemag.org/cgi/content/full/291/5507/1249
Ethical, legal, and social concerns about personalized genetic testing exist, despite the potential benefit. These include: “determining the proper balance between privacy concerns and fair use of genetic data” and “potential genetic discrimination by … employers.” Laws such as the ADA and the Rehabilitation act, as well as other federal laws, prevent some negative outcomes. Other laws are being considered. However, there are still many ethical ambiguities, including developments in genetic testing in the reproductive sciences.

Kurtz, G. (2010). Direct-to-Consumer Genetic Tests: Misleading test results are further complicated by deceptive marketing and other questionable practices. US Government Accountability Office Testimony Before the Subcommittee on Oversight and Investigations, House of Repreesentatives. Released 7/22/2010
http://www.gao.gov/products/GAO-10-847T
Fictitious consumers submitted DNA to several different companies. The results they got back were inconsistent, sometimes conflicted with actual medical conditions, and were subject to limitations not disclosed prior to purchase. “Although experts believe that these tests show promise for the future, they agreed that consumers should not rely on any of the results at this time.” “GAO also found 10 egregious examples of deceptive marketing, including claims made by four companies that a consumer's DNA could be used to create personalized supplement to cure diseases.”

Levina, M. (2010). Googling your genes: personal genomics and the discourse of citizen bioscience in the network age. Journal of Science Communcation 9: A06.
http://jcom.sissa.it/archive/09/01/Jcom0901(2010)A06/
Abstract: In this essay, I argue that the rise of personal genomics is technologically, economically, and most importantly, discursively tied to the rise of network subjectivity, an imperative of which is an understanding of self as always already a subject in the network. I illustrate how personal genomics takes full advantage of social media technology and network subjectivity to advertise a new way of doing research that emphasizes collaboration between researchers and its members. Sharing one’s genetic information is considered to be an act of citizenship, precisely because it is good for the network. Here members are encouraged to think of themselves as individuals, or nodes, in the network and their actions acquire value based on that imperative. Therefore, citizen bioscience is intricately tied, both in discourse and practices, to the growth of the network in the age of new media.

Magnus, D., Cho, M. K. & Cook-Deegan, R. (2009). Direct-to-consumer genetic tests: beyond medical regulation? Genome Medicine 1: 17.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2664950/
Abstract: The availability of personalized genomic tests, ordered directly by consumers, is rapidly growing. These tests are unlike other genetic or biochemical tests in the sheer amount of data they provide, but interpretation of these genome-wide analyses for health remains uncertain because of the lack of information about environmental and other factors, and because for the vast majority of genetic loci the associations with disease are weak. Although these tests could provide value to customers by offering tools for social networking or genealogy, there are questions about whether and how to regulate these tests and about the extent to which they provide medical information.

*McGuire, A. L., Cho, M. K., McGuire, S. E., & Caulfield T. The future of personal genomics. Science 317L 1687.
http://www.sciencemag.org/cgi/content/full/317/5845/1687
“We currently face an inflection point in clinical medicine as we move from specific diagnostic tests for particular disorders to much broader assays for variants whose effects we do not yet fully understand.” “Only clinically meaningful genomic test results should be integrated into medical decision-making. Clinical practice guidelines should be developed, considering how best to use and present genomic information, and whether and how to withhold information that patients do not want to know. Failure to anticipate what may become standard of care could result in these issues being decided through malpractice litigation.”

Pearson, H. (2008). Genetic testing for everyone. Nature 453: 570-571.
http://www.nature.com/news/2008/080528/full/453570a.html
Abstract: Private companies are starting to test customers' DNA for gene variants linked to an increased risk of conditions such as obesity or Alzheimer's disease. Helen Pearson looks at whether knowledge really is power when it comes to disease avoidance.

Varmus, H. (2010). 10 Years On – The Human Genome and Medicine. New England Journal of Medicine 362: 2028-2029.
http://content.nejm.org/cgi/content/full/362/21/2028
“10 years ago, The Human Genome Project was completed. “That occasion was rich with promises of new and more powerful ways to understand, diagnose, prevent, and treat disease.” Two years later, …. an editorial ... reminded readers that ‘the full potential of a DNA-based transformation of medicine will be realized only gradually, over the course of decades.’ Now, after the first decade of a postgenome world, only a handful of major changes … have entered routine medical practice. And most of these can be traced to discoveries that preceded the unveiling of the human genome. As Francis Collins, formerly the leader of the publicly funded sequencing efforts, recently commented: ‘the consequences for clinical medicine . . . have thus far been modest . . . the Human Genome Project has not yet directly affected the health care of most individuals.’”

Wadman , M. (2008). Genetics bill cruises through Senate. Nature, 453.
http://www.nature.com/news/2008/080430/full/453009a.html?s=news_rss
The Genetic Information Nondiscrimination Act, passed by the Senate in April 2008, forbids employers and health insurers from using people’s genetic information against them.

Information about genetic diagnoses

What happens when people get genetic information that indicates the likelihood of a major health problem? For many of us, learning while we are young that we are predisposed to Alzheimer’s disease in midlife represents exactly the kind of news we don’t want to learn from our genome, at least until there is some clear medical intervention that we take advantage of. However, there are a growing number of people who have learned exactly this kind of information about themselves. Fortunately, members of this important group have chosen to participate in studies of the impact of receiving this kind of information. Below are some of the references to this work. I think you will find the results rather unexpected. Beyond the reasonable and predictable acquisition of long-term health care insurance, there is little evidence of long-term psychological problems for those facing this kind of information.

*Ashida, S., Koehly, L.M., Roberts, J.S., Chen, C.A., Hiraki, S., & Green, R.C. (2010). The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL Study. European Journal of Human Genetics, 28 July 2010 [Epub ahead of print]
http://www.nature.com/ejhg/journal/vaop/ncurrent/full/ejhg2010119a.html

*Linnenbringer, E., Roberts, J.S., Hiraki, S., Cupples, L.A., & Green, R.C. (2010) "I know what you told me, but this is what I think:" perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate. Genetics in Medicine, 12: 219-27.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921681/?tool=pubmed

*Green, R.C., Roberts, J.S., Cupples, L.A., Relkin, N.R., Whitehouse, P.J., Brown, T., Eckert, S.L., Butson, M., Sadovnick, A.D., Quaid, K.A., Chen, C., Cook-Deegan, R., & Farrer, L.A. (2009). REVEAL Study Group. Disclosure of APOE genotype for risk of Alzheimer's disease. New England Journal of Medicine 361:245-54.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778270/?tool=pubmed

Reinhoff, H.J. (2010). My Daughter's DNA: One father's search for the scientific answers that no one seemed to have. Make Magazine 15: 40-43.
http://www.make-digital.com/make/vol15/?folio=40#pg42\
Probably the ultimate challenge in personal genetics occurs when your child has a very rare disease that has baffled the experts. In this article, Hugh Reinhoff describes his own struggle with such a situation involving his own daughter. Hugh is physician trained in medical genetics, and offers an informed account of his own efforts to find a misspelling in one of his daughter's genes that has created potentially the first example of a new and serious medical condition. This effort includes his establishment of the www.mydaughtersdna.org web site as a way for other people in a similar situation to find each other, and catalyze the kind of discovery that could lead to more rapid discovery of treatments for rare diseases.

*Zick, C.D., Mathews, C.J., Roberts, J.S., Cook-Deegan, R., Pokorski, R.J., & Green, R.C. (2005). Genetic testing for Alzheimer's disease and its impact on insurance purchasing behavior. Health Affairs 24: 483-90.
http://content.healthaffairs.org/cgi/content/full/24/2/483?maxtoshow=&hits=10&RESULTFORMAT=&fulltext