In this one hour program, nationally known bioethicists including Norman Frost of UW, Douglas Diekema of the Treuman Katz Center for Pediatric Bioethics, Beth Tarini of the University of Michigan, and Duane Alexander of the National Institutes of Health discuss the controversial and ethical questions surrounding mandatory newborn screening, which currently lack federal oversight and are managed by each state. Wide variations in this testing exist throughout the United States; nine states currently test for more than 50 genetic diseases, while others test for fewer than 10. Bioethicists have related concerns about whether parental consents should be obtained for each test, as well as whether testing should be uniform from state-to-state. Video Rating: 4 / 5
Complete video at: fora.tv Linda Avey, co-founder of the genetic testing company 23andMe, discusses the personal information she learned from having her own DNA analyzed. She also lists some medical advantages of obtaining and understanding personal genetic knowledge. —– Personal genomic testing (the analysis of the DNA of individuals) is now available for less than 0. The consequences of personal genetic testing are often debated, with advocates arguing that genetic data can lead to improved health care and critics warning that consumers may be unduly worried upon learning results. California regulations impose conditions on firms providing personal genomic testing. This symposium examines genomic testing technology, its ramifications, government regulation of the industry, and whether individuals should have their genome analyzed. – Commonwealth Club of California Linda Avey has over 20 years of sales and business development experience in the biopharmaceutical industry in San Francisco, Boston, San Diego, and Washington, DC Prior to starting 23andMe, she developed translational research collaborations with academic and pharmaceutical partners for Affymetrix and Perlegen Sciences. Avey also spent time at Spotfire helping scientists understand the power of data visualization and at Applied Biosystems during the early days of the human genome project. The advent of high density genome-wide scanning technologies brought huge potential for significant discoveries … Video Rating: 4 / 5
www.scienceprogress.org Why is direct-to-consumer genetic testing an important issue right now? Why have come states clamped down on new companies offering personalized genetic testing? And what policies can ensure that consumers benefit from safe and accurate genetic testing? CAP’s Rick Weiss answers these questions in the latest installment of CAP’s ASK THE EXPERT series. www.americanprogress.org
In Mid-September of 2008, Google founder Sergey Brin launched a personal blog, Too. The first post in that blog was a stunner and received huge media attention! The blog post unveiled that Brin who underwent a gene test at 23andMe, a California-based gene testing company co-founded by his wife Anne Wojcicki, is carrying a mutant gene linked to Parkinson’s disease. According to the results of 23andMe’s gene test, Brin’s genetic profile includes mutation of a gene, called LRRK2. And previous research has shown that this particular mutation of LRRK2, known as G2019S, may increase a person’s risk for a type of Parkinson’s disease that runs in families. Brin’s mother suffers Parkinson’s disease and 23andMe’s gene test showed that she also has the G2019S mutation in her genetic make-up.
“When my wife asked me to look up G2019S in my raw data (23andMe scientists had had the forethought to include it on their chip), I viewed it mostly as entertainment,” writes Brin in his blog. “But, of course, I learned something very important to me, I carry the G2019S mutation and when my mother checked her account, she saw she carries it too.”
Brin points out in the blog that he has “a markedly higher chance of developing Parkinson’s in my lifetime than the average person.” “In fact, it is somewhere between 20% to 80% depending on the study and how you measure,” he writes.
Like Brin, people are now interested in checking their disease risk through gene or DNA tests. And thus, genetic testing is emerging as a new trend in personal healthcare, where people prefer to order the test online, know about their propensity for various diseases, and prepare for disease prevention.
Regarding his test, Brin writes, in his blog: “This leaves me in a rather unique position. I know early in my life something I am substantially predisposed to. I now have the opportunity to adjust my life to reduce those odds (e.g. there is evidence that exercise may be protective against Parkinson’s). I also have the opportunity to perform and support research into this disease long before it may affect me. And, regardless of my own health it can help my family members as well as others.”
For a gene test, an individual has to register and make the payment online. Then a test kit is sent for collection of the sample (that is the saliva of the customer). The kit includes a test tube, where the customer has to spit, and then mail the tube to the company. The results are obtained in about a month through a web account. The information unveils a genetic make-up of the customer, propensities for certain diseases, and some other genetic features including how one would probably respond to a group of drugs.
However, the results unveiled by a gene test are only considered informational and not diagnostic. There are several companies where the tests can be carried out including (amid others) California-based 23andMe and Navigenics and Iceland-based DeCode Genetics. In 2008 the California public health department granted 23andMe and Navigenics a license to offer gene services to their customers, with the condition that physicians have to be involved in ordering the genetic tests.
According to a web document by Navigenics, the company scans its customers’ DNA for “genetic risk markers associated with both common and uncommon health conditions.” “We use rigorous standards for deciding which conditions to include in your report,” the document adds.
The test done by Navigenics unveils risks for several conditions, such as obesity, psoriasis, prostate cancer, glaucoma, Crohn’s disease, colon cancer, stomach cancer, breast cancer, lung cancer, celiac disease, lupus, heart attack, atrial fibrillation, Grave’s disease, type-2 diabetes, osteoarthritis, rheumatoid arthritis, to name a few. However, the test doesn’t cover certain conditions, Navigenics points out, and these include brain cancer, schizophrenia, height and eye color, amyotrophic lateral sclerosis and HIV susceptibility or resistance.
The cost for online gene testing varies and usually ranges from $1000 to $2500. However, on September 9, 2008, 23andMe came up with a substantial price cut for its gene testing service. According to the company, the price was reduced to democratize personal genetics and expand people’s opportunity to benefit from the genetic revolution. “Effective immediately, 23andMe is offering its service for $399,” declared a press release by the company. “23andMe is able to offer the reduced price thanks to technological advancements made by the company that provides its DNA scanning technology, Illumina, Inc,” the release says.
23andMe’s co-founder Wojcicki comments, in the release, “By taking advantage of continuing innovation we are able to introduce a new chip that will give people more relevant data at a lower price.” “We are excited that we are opening doors for more people to learn about their health and ancestry and for more people to be able to participate in advancing research. It is important to democratize personal genetics and make it more accessible.”
Despite this enthusiasm for genetic testing in America, there are issues that have evoked strong negative vibes against the trend. Critics say, a DNA test speaks only of the preponderance of an individual for a disease or more than one disease-it can’t say anything conclusive. For example, a large number of people with G2019S mutation (the mutation that Brin has) never contracts Parkinson’s disease. Moreover, according to critics, stamping an individual predisposed to certain conditions on the basis of genetic testing may cause substantial psychological trauma to him or her. That apart, there is also possibility that insurance companies or employers would discriminate against a person on the basis of a gene test, which is why in May 2008, President Bush signed legislation into law that would bar insurance companies and employers from discriminating against anyone on the basis of genetic information.
However, Brin considers himself “fortunate” for the genetic test he underwent. “Until the fountain of youth is discovered, all of us will have some conditions in our old age, only we don’t know what they will be,” he writes in his blog. “I have a better guess than almost anyone else for what ills may be mine and I have decided to prepare for it.”
The article Gene Testing OnLine – Do You Really Want to Know? may be found in its entirety on http://HealthWorldNet.com .
Choice is a fundamentally human quality. Not just epic or major decisions either. Beyond free will and religious notions of choice, there is a quality contained within the simple, everyday decision process that defines our lives as human beings; which sandwich to order, the best route to take home, what station to listen to. These little determinations result in the greater patchwork of our daily lives and histories.
But decisions are more than the sum of our choices. Children from a very young age begin to realize notions of consequence for their actions and decisions. The bible too notes that free will alone separates us from a divine plan, but that our freedom to do good or evil will result in punishment or reward. The same free choices that give us liberty can harbor immense results in this life and, according to some, the one thereafter.
These days we have more decision making power than ever before. Our notions of consequence are infinitely more informed than those of our ancestors. Most recently the incredible advances in genetic testing have extended this power. Genetic and prenatal tests can now determine likelihood that a child will be born with a birth defect, chromosome abnormalities, genetic diseases and other conditions, such as spina bifida, cleft palate, Tay Sachs disease, sickle cell anemia, thalassemia, cystic fibrosis, and fragile x syndrome.
Pregnant parents who undergo prenatal testing are then at a major decision making crossroads, if doctors or genetic testers inform them that a child is predisposed to such conditions. Should they view this as a challenge or burden, a responsibility they have acquired for better or worse, or should they abort the fetus entirely?
Obviously this quandary gives rise to the ethical debates similar of Roe vs. Wade and pro-choice vs. pro-life, but let’s evade those issues entirely and for the moment focus elsewhere.
The ethical dilemma concerning prenatal testing sidesteps the pro-life, pro-choice question and begets one equally complex and challenging. Fundamentally, the abortion debate questions one’s right to choose whether or not to have a child, but prenatal testing grants would be parents another choice: What kind of child to have.
When a woman opts to abort a fetus, we generally perceive that choice as being a symptom of the fact that she does not desire a child at the time. But parents who opt to abort because they have been told their child might be born with a defect are making judgments beyond their immediate offspring. Such parents might be said to have judged that certain human lives more valuable than others and that the sick or handicapped are less deserving of life.
These considerations ring eerily reminiscent of the eugenicists who believed that human hereditary traits could be altered by controlling (sometimes forcibly) reproduction within the population. Terrifyingly, eugenics was first successfully practiced within the United States on 30,000 prisoners who were deemed unfit to reproduce. Hitler and the Nazi party, influenced by eugenics, overtly shared the belief that certain human lives are more valuable than others. In 1934 the party enacted the “sterilization law” under which between 300,000 and 400,000 people deemed “feebleminded” were sterilized through vasectomy or litigation of ovarian tubes in women. The victims of this heinous policy were not blanket racial or ethnic groups, but the infirm, handicapped and mentally disabled. While advocates of prenatal testing are only gauging their immediate offspring’s right to life, the practice is philosophically evocative of eugenicists nonetheless.
Consider also the testing methods and scientific accuracy of prenatal testing in general. The prenatally administered Quad test is hardly 100% accurate; in fact it has a 5% false positive rate. Many mothers informed that their fetus is at high risk for Down syndrome or other genetic illnesses suffer undue stress and anxiety from false results. Stress is thought to be a high contributing factor in miscarriages and should certainly be avoided during pregnancy.
Steven Spielberg’s 2002 sci-fi film “Minority Report” deals with questions of premonition that are food for thought when considering prenatal testing’s accuracy. In the film a pair of “precogs” are responsible for predicting “precrime”, criminal acts that have yet to take place. A specialized police force then arrests individuals based upon their, unrealized, prophecy. The films central themes of freewill vs. determinism are philosophical fodder in assessing prenatal testing. Does a doctor’s scientific premonition is some way alter the course of events? We already know that prenatal testing isn’t entirely accurate, so is being aware of a possible fetal defect a terrible form of determinism?
Ultimately, no one right of mind would ever claim that being concerned for the welfare of an unborn child is somehow wrong. But claiming that certain lives are preferable to others is frightening nevertheless. Still, we should perhaps celebrate the evolution of decisions beyond: that each of us will have to be judged on his or her own merits accordingly.
The information in the article is not intended to substitute for the medical expertise and advice of your health care provider. We encourage you to discuss any decisions about treatment or care an appropriate health care provider.
