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To Test or Not To Test

To Test or Not To Test: A Guide to Genetic Screening and Risk

Doris Teichler Zallen
Copyright Date: 2008
Published by: Rutgers University Press
Pages: 232
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  • Book Info
    To Test or Not To Test
    Book Description:

    Tests are a standard part of modern medicine. We willingly screen our blood, urine, vision, and hearing, and submit to a host of other exams with names so complicated that we can only refer to them by their initials: PET, ECG, CT, and MRI. Genetic tests of our risks for disease are the latest trend in medicine, touted as an approach to informed and targeted treatment. They offer hope for some, but also raise medical, ethical, and psychological concerns for many including when genetic information is worth having.

    To Test or Not to Test arms readers with questions that should be considered before they pursue genetic screening.

    Am I at higher risk for a disorder?Can genetic testing give me useful information?Is the timing right for testing?Do the benefits of having the genetic information outweigh the problems that testing can bring?

    Determining the answers to these questions is no easy task. In this highly readable book, Doris Teichler Zallen provides a template that can guide individuals and families through the decision-making process and offers additional resources where they can gain more information. She shares interviews with genetic specialists, doctors, and researchers, as well as the personal stories of nearly 100 people who have faced genetic-testing decisions. Her examples focus on genetic testing for four types of illnesses: breast/ovarian cancer (different disorders but closely connected), colon cancer, late-onset Alzheimer's disease, and hereditary hemochromatosis. From the more common diseases to the rare hereditary conditions, we learn what genetic screening is all about and what it can tell us about our risks.

    Given that we are now bombarded with ads in magazines and on television hawking the importance of pursuing genetic-testing, it is critical that we approach this tough issue with an arsenal of good information. To Test or Not to Test is an essential consumer tool-kit for the genetic decision-making process.

    eISBN: 978-0-8135-4580-6
    Subjects: Health Sciences

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. List of Figures and Tables
    (pp. ix-x)
  4. Preface
    (pp. xi-xvi)
  5. Important Note
    (pp. xvii-xx)
  6. CHAPTER ONE Introduction: Genetic Tests Are Different
    (pp. 1-11)

    It seems that two boys, very good friends, each had gotten a pony for his birthday. They were delighted, of course. The only problem was that they found it impossible to tell the two animals apart. Once, one boy put a bell around the neck of his pony only to discover that his friend had done the same thing. The other boy had the idea of putting a red ribbon on his pony’s tail but then found that his friend had also done exactly that. Finally, in desperation, they decided to measure the two animals very carefully, hand over hand....

  7. CHAPTER TWO A Brief Overview of Susceptibility-Gene Testing
    (pp. 12-18)

    Some basic knowledge of the scientific aspects is helpful as you proceed on the path to a decision about genetic testing. But to acquire this knowledge, you don’t have to enter a graduate program in genetics. This chapter provides a general overview of susceptibility-gene testing that should be sufficient to assist with your decision making. (For those readers who wish to go more deeply into the science, a tutorial on genetics can be found in the Appendix. In addition, the Resources section points to other materials that provide further scientific background.)

    Despite the fact that we use the word “gene”...

  8. CHAPTER THREE Am I at a Higher Risk for This Disease than Other People?
    (pp. 19-38)

    I am like the Rosetta stone for my family.

    I had been having symptoms for years and the main thing that bothered me was irregular heartbeats. They sort of came on and then would go away. So, I consulted a cardiologist and went through a whole series of tests and he found nothing. Anyway, long story short, it got to where my heart was beating so irregularly that it almost incapacitated me in terms of moving around. I went to see a new doctor, a family doctor, whose office was nearby. She gave me a physical and about a week...

  9. CHAPTER FOUR Will the Test Give Me Useful Information?
    (pp. 39-61)

    It was always clear to me that there was a pattern of cancer in my family. Five years ago my older sister, Marie, was diagnosed with breast cancer at age thirty-three. I knew at that point my sister was not interested in genetic testing. Without any evidence of a gene, or of which gene, I knew that I would have to be screened for all the mutations and the expense was going to be close to $3,000. And, even if I could afford it, I knew that if I found out one way or the other that I had a...

  10. CHAPTER FIVE Is This the Right Time in My Life to Be Taking This Test?
    (pp. 62-72)

    When I was a little girl, we took care of my grandmother while she was sick with ovarian cancer. When my mother was diagnosed with the same thing, my immediate thought was that this is a death sentence and there’s nothing I can do about it. After my mother’s surgery, the doctor came out and explained to us that she had ovarian cancer and then he looked straight at me and said, “I would highly recommend genetic testing for you at this point.” I contacted the genetic counselor but I have not been tested yet, and it’s been one of...

  11. CHAPTER SIX Will the Advantages Gained from Having the Genetic Information Outweigh the Disadvantages?
    (pp. 73-107)

    I have had breast cancer, and from my own research I knew there was a genetic test, that there were genes that could be identified for the breast cancer. I had decided I was going to do breast cancer genetic testing because I have a daughter and a granddaughter and I thought that it was of importance to them to see if I did have that identifiable gene. And a lot of people asked me, what are you going to do if it turns out positive? Are you going to have an oophorectomy [ovary removal] or are you going to...

  12. CHAPTER SEVEN Decisions, Decisions
    (pp. 108-118)

    My father and several of his relatives had died of colon cancer, but he always said there wasn’t a genetic link. He blamed it on their diet, that they ate a lot of foods fried in lard. But a cousin was tested and they found a colon-cancer gene. I was just born for the Internet. I love having all of this information available to me, and I searched out information and decided to have genetic testing myself to find out my chances for getting colon cancer. The major reason is I have three children. I couldn’t cope with knowing or...

  13. CHAPTER EIGHT Deciding about Other Types of Genetic Tests
    (pp. 119-137)

    Erika, thirty-nine years old, is finally pregnant. It has taken nearly a year of visits to an infertility clinic, and she and her husband, Tim, are ecstatic. At her first prenatal care visit, her obstetrician mentions that Erika is at a higher risk for having a child with Down syndrome. Erika is stunned. “How can that be?” she says. “Everyone in my family is healthy, and in Tim’s family too. No one has anything like Down syndrome.” Then she wonders how she might find out if her baby has this condition.

    Ted’s cousin and best friend since childhood has cystic...

  14. CHAPTER NINE The Future of Genetic Medicine
    (pp. 138-150)

    For decades we have seen how the astonishing advances made in genetics laboratories have steadily been introduced into medical practice. Techniques for probing into the worlds of embryos and fetuses—and uncovering some of the genetic secrets concealed there—have become standard procedures offered to pregnant women in the course of their prenatal care. Nowadays, newborn babies are tested for any of several genetic illnesses, so that treatments can be started early before harmful effects set in. And testing to establish the genetic status of adults with regard to single-gene disorders such as cystic fibrosis and Tay-Sachs disease is becoming...

  15. Appendix. A Brief Introduction to Genetics
    (pp. 151-172)
  16. Glossary
    (pp. 173-180)
  17. Resources
    (pp. 181-190)
  18. Index
    (pp. 191-198)
  19. Back Matter
    (pp. 199-200)