Blog #14! The life book & Humanities

Part 1:

The stage of life I will write about will either be pre-conception or during pregnancy. The relevant element of genetic technology that I will incorporate into my article is genetic testing: an array of techniques including analysis of human DNA, RNA or protein. Genetic tests are used as a health care tool to detect gene variants associated with a specific disease or condition, as well as for non-clinical uses such as paternity testing and forensics. In the clinical setting, genetic tests can be performed to confirm a suspected diagnosis, to predict the possibility of future illness, to detect the presence of a carrier state in unaffected individuals (whose children may be at risk), and to predict response to therapy. They are also performed to screen fetuses, newborns or embryos used in in vitro fertilization for genetic defects.

Part 2:

The National Human Genome Research Institute (http://www.genome.gov/10002335) is a research institute that primarily focuses on the research of human genomes. They have come up with important questions that may arise on the subject of genetic testing, tracked the legislature concerning genetic testing, their concerns and activities centering genetic testing, recommendations they have for policies concerning genetic screenings, and lastly a list of reports on genetic testing/screenings.

The Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) - staffed by the National Institutes of Health (NIH) Office of Biotechnology Activities - provides policy advice to the Department of Health and Human Services (DHHS) on the broad array of complex medical, ethical, legal and social issues raised by genetic testing.

On March 26^th of 2009, SACGHS wrote a letter to the Institute of Medicine's Committee on Comparative Effectiveness Research Priorities. “Genomic tests are expected to become increasingly prevalent in the coming years. The hope is that these tests will enable early diagnosis of common diseases and guide preventive measures tailored to each individual’s genotype. Similarly, pharmacogenomics tests are expected to enable more tailored treatment. Given the promise and potential value of genomic tests in reducing the burden of common diseases, these tests warrant careful study to assess their clinical utility…. working group does not have sufficient resources to keep pace with new and anticipated genomic tests. Thus, other government resources are needed to support the primary studies of these tests and disseminate their results. Like genomic information, family health history can provide clues to a patient’s inherited risk for common diseases. This test is already commonly used in clinical care but, for the most part, providers lack evidence-based guidance on how to use the information in clinical decision-making. Comparative effectiveness studies of family health history would provide needed guidance on how to incorporate this low-cost clinical tool into health care practice. SACGHS has made recommendations to the Secretary of Health and Human Services about the need for the establishment and support of a program to conduct studies on the clinical utility of genomic tests. In our view, such assessments are key to the successful translation of genomic discoveries into clinically useful tests. SACGHS reports and recommendations are available at…”

The US Department of Health and Human Services also plays a role in Genetic Testings. DHHS mission is to Helping Consumers Take Control of Their Health Care. The Affordable Care Act, passed on September 23rd, 2010, gives consumers new rights and benefits in their health insurance. New funding for state consumer assistance programs will make sure people get those rights and benefits and take control of their health care. DHHS is involved in genetic screenings/testing: Statement on Genetic Testing in the New Millenium: Advances, Standards, Implications by Francis S. Collins, M.D., Ph.D. “Having the complete set of human genes – the periodic table for biology – will make it possible to begin to understand how genes function and interact. All of human biology then likely will be divided into what we knew before having the human DNA sequence and what we knew after. But, the HGP does not stop with completion of the human sequence. "This rapid availability of genomic resources and tools will accelerate dramatically the isolation of genes involved in disease and in drug response. As genome diagnostic and treatment technologies move from the laboratory into the health care setting, new genetic testing methods will make it possible to read the instructions contained in an individual’s DNA. Such knowledge may:

· Confirm a diagnosis of an individual who has already developed a disease;

· Predict risk of future disease in healthy individuals and alert patients and their health care providers to begin prevention strategies; or

· Identify risks of having a child with an inherited disorder.

In general, researchers and health care providers agree that predictive genetic testing should not be offered in the clinical setting without knowing the reliability and validity of the tests. Many also have raised concerns about the clinical use of genetic tests in the absence of safe and effective medical interventions for people who are found to carry inherited alterations that put them at high risk for disease. However, genetic testing still is a relatively new medical intervention for which regulatory and legal controls are unclear and the pathway for the clinical integration of new predictive tests has yet to be established.

From its inception, the Human Genome Project of the NHGRI recognized the responsibility not only to develop powerful new gene-finding technologies, but also to address up front the broader implications of these newfound abilities to decipher genetic information. Because genetic information is personal, powerful, and potentially predictive, its misuse can have significant consequences to individuals or to groups of individuals. NHGRI commits 5 percent of its extramural research budget to support research on the ethical, legal, and social implications (ELSI) of advances in genetics. The early goals of the ELSI program focused on four high-priority areas: (1) the use and interpretation of genetic information; (2) the clinical integration of genetic technologies; (3) issues surrounding the conduct of genetics research; and (4) public and professional education in genetics.

ETHICAL SOCIAL AND LEGAL

Protections must be erected against the misuse of genetic information. Fears about the loss of privacy of genetic information and the loss of a job or insurance coverage may make people hesitant to use medical advances. They also may be hesitant to volunteer for studies of disease-linked gene mutations for fear the results could be used against them. Although many states have attempted to address "genetic discrimination" in health insurance and the workplace, federal legislation would provide the most comprehensive protections.

Every physician, nurse, and health care provider will need to become familiar with this emerging field of genetic medicine. The need for medical genetic specialists who can sort out the most complex cases will be considerable, but there will not be enough of them to go around, and most genetic medicine will be delivered by primary care providers.

Finally, we must implement the proper regulatory and legal framework for the successful clinical integration of emerging genetic technologies. The Task Force on Genetic Testing report provided a good starting point for that process. There is still much work to be done. Now is the time for all parties to come together and develop a meaningful framework for insuring the safe and effective use of new genetic technologies in medicine. “ http://www.hhs.gov/asl/testify/t990421a.html

Part 3:

Genetic Discrimination: http://www.genome.gov/10002328#al-1

“Genetic discrimination occurs if people are treated unfairly because of differences in their DNA that increase their chances of getting a certain disease. Everyone should care about the potential for genetic discrimination. More and more tests are being developed to find DNA differences that affect our health. The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The law was needed to help ease concerns about discrimination that might keep some people from getting genetic tests that could benefit their health. The law protects people from discrimination by health insurers and employers on the basis of DNA information. The law does not cover life insurance, disability insurance and long-term care insurance. Before the federal law was passed, many states had passed laws against genetic discrimination. For the text of the bill see: H.R. 493”

Genetic Discrimination is a relevant concept that can relate to the ideas of my article because some people are actually afraid that genetic testing can promote Genetic Discrimination. That genetic discrimination can occur within the family if one if afraid of their family member(s) finding out what one may be carrying, which may be a new revelation to others and make them wonder who it was passed down from. Genetic Discrimination might also occur when a Health Insurer finds out about the genetic abnormality, and may deny a person health insurance because of that. Employers may also use genetic information to determine whether to hire, keep, or fire employees. Genetic Screenings will be a huge advance in bio-technology, but shouldn’t be pursued further unless the genetic information is protected, thus preventing the possibility of it being used against someone. The Genetic Information Non Discrimination Act of 2008 was created to protect Americans from health insurers and employers who may try to discriminate them based on their genetic abnormalities. The law that was passed is basically the minimum requirement of protection a state must have to protect people against genetic discrimination, thus creating different levels of protection depending on the state in which you reside.

Economic: http://www.genetichealth.com/GT_Genetic_Testing_Costs_of_Genetic_Testing.shtml

Say you go in to have a meeting with your doctor to decide whether genetic testing is the right path for you and your partner. After a while of one on one conversation you are hit with the surprisingly large amount of money it will cost you. It brings up these questions:

Why Are Genetic Tests so Expensive? Often people have this reaction when they find out the price. Reason 1 why genetic testing procedures are so expensive varies depending on the type of lab procedure conducted, the size and number of genes you are having tested, and whether the test is conducted in a commercial or research lab. Reason 2 is because genetic tests are rare, it is not every day that one science will conduct 100 tests as they do with other common procedures. If the rate of people getting genetic tests increases, there is a possibility of the cost decreasing. Reason 3 is labor intensive- genetic testing requires the extraction of DNA from the blood sample which is not required in non-genetic tests. Not to mention the various levels of review that the test results have to go through before you can get them back. This is something that is necessary though, for the most accurate results of your genetic screening you must pay the price.
What Do Genetic Tests Really Cost?

Costs for Selected Genetic Tests by Disorder and Type of Test
LAB Test	Sequencing	Heteroduplex Analysis	DGGE	ASO	PTT
HNPCC	$500-3000	$260	$250-800	--	--
FAP	$800-1000	--	--	--	$235
BRCA1	$1290	--	--	$350-450	--
BRCA2	$1290	--	--	$350-450	--
BRCA-Ashkenazi mutations	--	--	--	$190-354	--
DGGE=Denaturing gradient gel electrophoresis ASO=Allele specific oligonucleotide PTT=Protein truncation test

Should I Opt for the Less Expensive Test? Choosing the cheaper test may yield a less accurate or not a detailed account of your results from the genetic screening. The cheaper test may only include results based on what is already known to be in your family, whereas in a more costly genetic test, the results will yield ‘whole genes and identify mutations when one has not previously been identified in a family.’ If you are applying for a genetic screening, you should choose your test should be based on what results you want, not the cost.

Should I Use Insurance to Pay for A Genetic Test?

Pros of using insurance: The biggest pro of using insurance is that genetic tests cost money. Having your insurance company pay for the testing will save you from paying up to thousands of dollars for testing. If you get a positive result, your insurance company may be more likely to cover medical interventions specific for your disorder.
Cons of using insurance: If you use insurance to pay for testing, there will likely be a record in your file that a genetic test was ordered for you. The results may or may not be part of this record. This creates the potential for lack of genetic privacy that may lead to job, medical, or other discrimination.

Miscarriages: http://www.ghr.nlm.nih.gov/handbook/testing/riskslimitations

Although it is not guaranteed, and maybe even considered rare, genetic tests risk the chance of having a miscarriage. ‘The procedures used for prenatal testing carry a small but real risk of losing the pregnancy (miscarriage) because they require a sample of amniotic fluid or tissue from around the fetus.’

Abortions related to Genetic Screenings: http://www.nytimes.com/2007/05/13/weekinreview/13harm.html?_r=1 ARTICLE!

“SARAHLYNN LESTER, 32, considers herself a supporter of abortion rights. She gives money to the National Abortion Rights Action League and volunteers for Planned Parenthood. But as a woman who continued a pregnancy after learning that her child would have Down syndrome, she also has beliefs about the ethics of choosing, or not choosing, certain kinds of children.

“I thought it would be morally wrong to have an abortion for a child that had a genetic disability,” said Ms. Lester, a marketing manager in St. Louis.

As prenatal tests make it possible to identify fetuses that will have mental retardation, deafness, early-onset Alzheimer’s disease and a range of other conditions, such personal deliberations are adding a new layer to the fraught political debate over abortion.

Abortion rights supporters — who believe that a woman has the right to make decisions about her own body — have had to grapple with the reality that the right to choose may well be used selectively to abort fetuses deemed genetically undesirable. And many are finding that, while they support a woman’s right to have an abortion if she does not want to have a baby, they are less comfortable when abortion is used by women who don’t want to have a particular baby.

“How much choice do you really want to give?” asked Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania School of Medicine. “That’s the challenge of prenatal testing to pro-choicers.”

For many women and their partners, the decision to terminate a pregnancy after a prenatal diagnosis of a serious genetic defect can be harrowing, often coming after a painful assessment of their own emotional and financial resources.

And there is widespread support for such an option: 70 percent of Americans said they believe that women should be able to obtain a legal abortion if there is a strong chance of a serious defect in the baby, according to a 2006 poll conducted by the National Opinion Research Center.

“This issue underscores the importance of families making personal, private decisions without political interference,” said Nancy Keenan, president of Naral Pro-Choice America, in a statement. “The decision should be with women, their families, and their doctors.”

But as more tests become available for conditions that do not involve serious disabilities, childhood diseases or death in early childhood, the emerging ethical questions may inject more nuance into a perennially polarized discussion.

“It will capture where the mainstream of Americans are on prenatal testing and abortion,” Dr. Caplan added. “Which is, some reasons seem good, and some don’t.”

Traditional anti-abortion advocates, from conservative politicians to Pope Benedict, have in recent months criticized the growing use of prenatal testing as a subtle form of eugenics. But the specter of fetuses being selectively targeted for elimination also has the potential to disturb solid supporters of abortion rights.

Some disabilities rights advocates, for example, are pressing the need to reconcile protecting abortion rights with a democratic imperative to embrace human diversity.

“If the response is simply, ‘You all are just anti-women’s-right-to-choose,’ I think that misses some of the important disabilities rights issues that are being raised,” said Andrew Imparato, president of the American Association of People With Disabilities.

Mr. Imparato said he was disturbed to learn recently that in several states with legislative efforts to restrict abortion rights, groups like Planned Parenthood often lobby for an exemption for women who learn their child would have a disability.

But he said that the person who alerted him was a Planned Parenthood lobbyist who was herself troubled by the tactic because it seemed to run counter to the progressive political agenda that supports both choice and tolerance of human difference.

“You’ve got these two basic liberal values on a kind of collision course,” said Rayna Rapp, an anthropologist at New York University who has studied attitudes toward prenatal testing.

Ms. Rapp argues that it doesn’t need to be that way. One solution, she said, is to make sure the world is a more welcoming place for people with disabilities. Other disabilities rights advocates emphasize the need to educate prospective parents about the positive aspects of raising disabled children.

Still, social policy may be unable to sway a seemingly strong personal preference for avoiding children with perceived genetic defects. About 90 percent of women who learn they are carrying a fetus with the extra 21st chromosome that causes Down syndrome choose an abortion. Studies have shown that many women choose to abort for diagnoses of less serious conditions.

And a growing number of fertile couples are using in vitro fertilization to gain greater control over the genetic makeup of their children. Under a procedure known as preimplantation genetic diagnosis, doctors screen embryos for a high risk of developing breast cancer or arthritis, and implant only embryos with the desired genetic makeup.

The questions may only become murkier if testing extends to traits like homosexuality or intelligence.

But Kirsten Moore, president of the pro-choice Reproductive Health Technologies Project, said that when members of her staff recently discussed whether to recommend that any prenatal tests be banned, they found it impossible to draw a line — even at sex selection, which almost all found morally repugnant. “We all had our own zones of discomfort but still couldn’t quite bring ourselves to say, ‘Here’s the line, firm and clear’ because that is the core of the pro-choice philosophy,” she said. “You can never make that decision for someone else.”

The rhetoric of “choice,” however, can take on a more troubling resonance when it comes to selecting children with new reproductive technologies, disabilities rights advocates say. “It so buys into this consumer perspective on our children,” said Marsha Saxton, a senior researcher at the World Institute on Disability in Oakland, Calif., who is an abortion rights supporter.

With a new, more conservative Supreme Court, which has just upheld a law banning a procedure critics call partial-birth abortion, disabilities rights advocates say they fear that the reproductive rights movement sees such discussions only as an opening to abortion opponents.

“The fear is that this will be used as an excuse to limit women’s access to abortion,” said Sujatha Jesudason, associate director of the Center for Genetics and Society, a nonprofit group promoting limits on reproductive technology. “But as these selective technologies are getting popularized we need to try to agree on a set of principles without giving up the fight for reproductive rights.”

If that doesn’t happen, some abortion rights supporters say they are worried that their opponents may hijack the discussion.

“Some religious conservatives say that they trust God to give them the child that is meant to be,” wrote Ann Althouse, a law professor in Madison, Wis., who identifies herself as an abortion rights supporter on her legal blog. “But isn’t there something equivalent for social liberals? Shouldn’t they have moral standards about what reasons are acceptable for an abortion?”’

In this article there is a woman who supports abortion rights, and after she found out her child would have down syndrome she still chose to continues her pregnancy. This article shows all the different arguments of the rights or wrongs about abortion: religious conservatives say that they trust God to give them the child that is meant to be, I thought it would be morally wrong to have an abortion for a child that had a genetic disability, As prenatal tests make it possible to identify fetuses that will have mental retardation, deafness, early-onset Alzheimer’s disease and a range of other conditions, such personal deliberations….etc

It brings up the question in politics of what are the fundamental basics that abortion rights should be based on? Your morals or your religion or what the president thinks perhaps? This is something I really want to look into for my article.