What About Genetic Testing?
Have you ever thought of the complexities that have been added to our lives in the past few decades?
Are you mystified at the grocery store when the cashier asks “Paper or Plastic?” Does the number of alternative choices on a restaurant menu’s “choice of sides” boggle your mind? Are you able to answer when a coffee clerk begins to ask you whether you want large, medium or small in a language you do not speak? Do you want all wheel drive, four wheel drive, front wheel drive or traction control in your new vehicle? Will you choose an electric car and trust that an outlet will be available when and where you need it? Or will you choose a hybrid, a diesel, or a four, six, or eight cylinder engine?
If you are a woman, will you choose to start a family or finish grad school? Will you try to do both, and select the best alternative child care for your little ones? Will it be in a home setting, or in an infant program, or a nursery/preschool/private kindergarten center? Or will you use birth control faithfully, with a back up safety plan of the morning after pill? Can you make this decision on your own, or will others be involved? With whom will you choose to deliberate this life-altering decision? Or is adoption going to be more appealing, more humane, or more possible? Will you have one, or two, or many children? Will you have any?
Do you think that children today have a much shorter childhood, or a much longer adolescence? Are PG movies available in your elementary or middle school child’s classroom, or at a friend’s home, regardless of your parental values? Does PG mean it is okay for children with their parents, or alone if parents know about it? And is PG 13 really just the level above PG, or is it more the level below R? Will you have time to read reviews of every movie that your child wants to see? Will you have time to screen video games, or take text messages from your children, your parents, your friends, your spouse, and your credit card bank?
Henry Ford made one car for a long time, and it was always black. Grocery sackers used paper bags for decades; then plastic was deemed less harmful to the trees, until folks realized that the plastic bags never, ever decompose and are in fact more harmful than chopping down trees that can be replaced. Women, for generations, married at a young age and began having children when children were conceived. Children most often, a few hundred years ago, worked alongside their parents in whatever economic pursuit the family used for survival. School generally ended at an early age when children were old enough to work on their own and began looking for a life partner. And by twenty, women were married or forever deemed a spinster. There were no prolonged adolescent years.
Perhaps the most astonishing developments have been in the field of medicine. Students in middle school study biology that was once taught only to college-bound high school students. Health choices are based on endless internet research, with opposing sides using social media to promote either the pharmaceuticals being developed every day, or the ‘back to nature’ holistic care being proclaimed as linked to a vegetarian lifestyle.
For a while, most knowledgeable people understood DNA to be something like a fingerprint; it would help forensic scientists identify relationships, and find people innocent or guilty. But recently, more and more genes are being closely observed, understood and identified. Doctors are seeing patients who have researched widely on the sources available on the internet. Patients are learning to be discriminatory regarding websites’ credibility. Experts are coming out of the woodwork.
The new conundrum of all this knowledge is whether, when, how, where, and with whom one ought to have genetic testing done. Learning whether one has a particular susceptibility to catastrophic illnesses due to their genetic composition rather than simply due to their lifestyle choices or environmental setting is becoming more the accepted norm. Scientists (doctors and technicians) can analyze a patient’s blood and other fluids to determine the presence of absence of harmful or destructive cells and now genes. The knowledge they are able to share with their clients, or customers, or what we more broadly call patients, can be life-altering.
We gradually learned in the second half of the twentieth century that identifiable carcinogens would cause cancer. Whether they existed in the environment, due to pollution, or in cigarettes, they were finally identified and could, with effort and cooperation, be avoided. Toward the end of that amazing century, we discovered that the genes we inherit from earlier generations are also markers of susceptibility. Genetic Testing can identify those genes that may be altered from their original design. How the alteration took place generations ago may not be known, but how it will affect present and future generations can, in some cases, be foretold.
The question, then, is how much is nature and how much is nurture? It’s an old question that people have always considered and debated. If one has a gene that makes one more susceptible to cancer or other diseases, and one learns that at a young age, can one change the future by making different lifestyle choices, or different environments in which to grow, or different experiences or investments or plans? Or would such knowledge raise only possibilities … likelihoods … odds of occurence … probability? But without a crystal ball, those outcomes can only be hypothetical. One person might decide not to invest in graduate school, believing that their life will be shorter and is to be enjoyed in the present, for there could be no future. Another person carrying the same gene, the same hypothetical risk, but not having the knowledge of that gene might invest in their education, pursue their passion, strive to reach a goal, and impact others’ lives in the process. The one choosing to seize the day may live a long life, happily or with regrets. The one choosing to pursue the goal may be cut down in his or her prime and feel all was misspent, or rejoice in what they were able to accomplish. Or the opposite could happen to each of them.
One of my close relatives does have an altered gene … the BRCA2 gene, which raises the susceptibility to various forms of cancer. Initially, this gene was thought to be related to breast cancer only (hence the initials, BR and CA) But now it is understood to indicate an increased risk of many cancers. And so the question that falls to the rest of my close relatives is whether to have Genetic Testing done. Insurance companies will pay for this only if it is medically indicated. As I already have three different types of skin cancer (Basal, Squamous, and Malignant Melanoma) my doctor has agreed to request the testing.
It is easy for me to agree to genetic testing ~ I am in the late fall of my seasons. My winter is ahead; summer ended early for me. I did not know that I would be moved off of my chosen path, my wish to teach for another decade, my desire to provide a strong retirement income for us, by a late diagnosis of Multiple Sclerosis. Resenting the self-inflicted treatment of nightly injections brought on another illness, Depression. And when I had accepted the necessity of retirement due to increasing memory loss, fatigue and apathy, whether it was due to MS or Depression did not matter. In time, I reclaimed my destiny, stopped the injections and denied the MS diagnosis and its treatments. Feeling stronger and more capable, I was then unexpectedly diagnosed with Malignant Melanoma. Having avoided the sun for most of my life due to heat intolerance, and expecting that the cancers could be easily removed through surgery, the depression again arose when the skin surgeries seemed never ending. But having come through them I’ve learned that I can face challenges, and can make my own choices regarding my present and my future.
Having the testing done on me may show that there is no need for my children and grandchildren to consider themselves susceptible to the altered gene that raises cancer’s likelihood. Of course, if the testing shows that I do carry the altered gene, the question will then pass to the next generation, and they will have to consider the choice of whether to pursue the knowledge of a 50/50 possibility of carrying that on further to the next generation. It is not a choice I would have wanted to pose for them. Nor is it a choice that my ancestors would have wanted to pass on to me, or to my sister, or my parents, or my grandparents.
Life without all of this scientific progress was no doubt difficult and challenging. Before the carcinogens were identified, cancer was a mysterious, blameless disease that was a part of life. Multiple Sclerosis was diagnosed by testing a patient’s tolerance for heat. Malignant Melanoma was probably seen as age spots. Depression was somehow relegated to the category of sin, or character weakness. Genetic Testing and internet research was simply the dream of scientists, and not a part of our lives. But it is here now, and we will learn to deal with the questions it raises. It is as baffling as “Paper or Plastic.” We can choose to find the answer, or turn away, leaving it for the next to decide.
When I visit the hospital this week for the genetic testing, I will bring my finished “Journey of Hope” quilt in to my neurologist; let the fundraising continue! Here is a picture that a member of the Merrimack Valley Quilt Guild took – she caught perfectly the quilting detail that I am so proud to say “I did it!”