Can Genetic Testing Benefit You?
by Barbara Free, M.A., LPCC These days, we read and hear about
genetic testing of all kinds, advertised by various testing companies,
for ethnic background, genetic relationships, propensity for numerous
diseases, disabilities, potential assets, and other conditions. Most of
these tests are available to anyone who pays the fee and submits a
saliva sample. Others are only available through medical resources. The
companies use various testing methods and produce various results,
some corroborating others and some not in agreement. There is also
genomic testing, a clinical procedure, used especially for testing of
the DNA in a tumor, which is not the same as an individual’s
overall DNA, in order to custom-design medication or other treatment
specifically for that tumor in that person. Articles in newspapers,
magazines, on-line, as well as television and radio news, and even
professional journals and books, can be very confusing, misleading, or
alarming, or they can raise unrealistic hopes.
Many adoptees, particularly those in closed adoptions, have a special interest in genetic testing, for several reasons. Some look to DNA tests to help find genetic relatives, including siblings and/or birth parents, while others are looking for medical information, or for ethnic background. Some persons have, indeed, after having their own DNA tested through one or more of the companies that will compare an individual’s DNA to that of others who have been tested by the same company, been able to find genetic relatives. Through those connections they have learned their original surnames and/or have found the identity of birth parents, especially birth fathers who were unnamed or incorrectly named in the written adoption records. Others have been able to find siblings, cousins, aunts and uncles. Another report in this issue refers to several persons in Washington State, adult adoptees, who were able to find birth family in this way. Aside from wanting to identify and possibly meet genetic relatives, many adoptees, as well as non-adoptees, want to know more family medical history and possible future medical conditions. Some genetic testing companies are now FDA-approved to release to consumers limited medical information. Some of this may be controversial, both its accuracy and its relevance. Some such information may be questionable or misleading. Having a gene or combination of genes that may be associated with some possible future medical condition does not necessarily mean the person will develop that condition, and can lead to unnecessary fear and anxiety for the person and their family. On the other hand, some genes are always associated with certain diseases or conditions, or with being a carrier for that condition. Some such testing could save a person’s life, by making them aware and therefore able to take appropriate action, if possible. However, test results purporting to tell the testee how well they sleep, how much caffeine they use, or what color eyes they have, are probably useless, and often incorrect. For instance, this writer’s son was told that his Parkinson’s Disease is probably not genetic, although he has learned of several cases in his family, including his father and his half-sister, but was also told he does not sleep well, which he does, and that he uses a lot of caffeine, which he did in the past. This information was not too helpful to him. Most of these reported results are obtained by comparing the individual’s DNA markers with those of others who have tested through that same company and have filled out detailed questionnaires at the time of sending in the sample. When a person gets misleading or incorrect information, it can lead to skepticism about the very real information obtained through DNA testing, such as distant genetic background or clear genetic information about medical issues. At times, it may seem akin to astrology readings or fortune-telling at the county fair. I overheard two young women discussing this at the Celtic Games. One said she was considering DNA testing to see if she was Irish, and the other said, “Do you believe in it? Do you think there is truth to it?” She seemed to think it might be some kind of magic, or something one should accept or reject as a matter of faith, rather than fact. DNA testing certainly can confirm one’s genetic background, which does not mean the test will tell you where your great-great grandparents lived, but where some of your ancestors were many hundreds or thousands of years ago. As groups of people migrated, especially across Africa, Asia, India, and Europe, and over time had genetic mutations which were passed on, some stayed in those places and others moved on. These genetic changers, or markers, are what the DNA testers look for. A particular testing company chooses which markers to test, and how many to test, sometimes depending on the price of the particular test. Getting a test with more markers does not necessarily mean a person will learn more or find more relatives. To indicate a genetic match with another person, that other person must also have been tested by the same company. In a recent article in Family Tree Magazine (January/February 2018), there is an excellent explanation of one particular test, a Y-DNA test from Family Tree DNA, to trace a paternal line. The article explains the reasons to have their 37, 67, or 111 marker tests to find a common male ancestor within four to eight generations. For adoptees, a Y-DNA test might be helpful in locating a birth father or other male relative related to the birth father. An autosomal test, for both male and female ancestry, might be more useful. Testing for more markers is not always more helpful and informative than a test that focuses on particular strategic markers, particularly if one is looking for ethnicity. Those results may seem too general to be useful, if the printout says “Western European” or “Iberian,” or mentions “Roma.” These results relate to past migrations of one’s ancestors, not to the country from which one’s recent ancestors came to the U.S. These are not the same as paternity tests, which can be obtained at the local drugstore, to determine if one individual is actually the offspring or father of the other known individual. There are more types of DNA tests now becoming available at stores such as Walgreen’s, however. Several years ago, before DNA tests were as plentiful and relatively inexpensive as they are now, an O.I. member was tested, along with an assumed half-brother on her purported biological father’s side, and they were able to confirm that they were half-siblings, although that combination is more difficult to prove. Both knew their respective birth mothers, and the half-brother had been raised by his mother, and knew that this particular man was his birth father, while the O.I. member, a female, had been adopted in a closed adoption, but had learned her birth mother’s identity, and had a name, from adoption papers she was able to obtain, for her birth father, but wasn’t sure of it, and no one could locate him. She did find his original name, his tribal affiliation in Canada, and some relatives there. All of this took some time, and research on her part, with the DNA test providing the final confirmation of her ethnic background and her relationships. In the New Yorker magazine’s February 5, 2018, issue, there is an article about a freelance writer named Jennifer Mendelsohn, who learned through genealogy research (not DNA testing) that a certain public figure supporting a bill that would penalize immigrants who didn’t speak English, had a great-great grandmother who only spoke Yiddish. She went on to do more genealogy research as a hobby and has used it to help some adoptees find birth parents, and where their ancestors immigrated from. If an adoptee were to use her services, or a similar genealogist’s help, they might also want to do DNA testing to help confirm their earlier ethnic background. This does also raise some questions. Will prospective adoptive parents begin to request that birth parents have DNA tests to determine ethnic background, possible medical issues, etc.? Would they then decide whether or not to adopt this child based on this information, or their comfort with the information? What if birth parents do not wish to release their DNA information to others, or what if the birth father is not available? What if prospective adoptive parents want prenatal DNA testing of the child as well? These are ethical questions that doctors, agencies, and birth parents, as well as adoptive parents, may need to consider. Whether one is considering a DNA test to locate cousins, parents siblings, ethnic background, or possible health information, one might check out several companies to find the most appropriate test, or even test with more than one company. One must also be prepared to deal with whatever they learn. One O.I. member had located what she thought was her birth son, through Internation Soundex Reunion Registry (ISRR), and had met him, but the DNA tests showed he was not her son, although the birth dates and the hospital matched. She was disappointed, but a few months later, through a searcher, she did find her son, and the first young man also found his birth mother. A young man I know, not adopted, found that his father’s legal father was not the biological father, which had been rumored, but not previously proved. The ethnic background did not match up, but it did match with the person rumored to be the actual father (this young man’s grandfather). The test gave him, and his family, some relevant information based on the test findings, which also caused some anxiety about possible risk of recessive genes that might cause medical problems or even current medical issues, most of which have so far not proved accurate. A DNA test, no matter how detailed, is not designed to tell you that your third great grandparents were royalty, or criminals, though correspondence with “matches” who have consented to be contacted, persons who were also tested by the same company who have some matching DNA, might lead to that information. Again, be prepared for what you find. The more of your DNA that matches, the closer you are biologically related to the other person. Because people have always moved, intermarried, changed names, etc., you might find you are distantly related to your spouse or best friend. Queen Elizabeth and Prince Phillip, for instance, are third cousins, but they already knew that. Queen Victoria and Prince Albert are great-great grandparents to both of them, and Victoria and Albert were first cousins, which was not uncommon in that day and age, among royalty, but also among the common folk. If you start doing genealogy research or in-depth DNA testing, you might find that in your own family. The price of testing has gone down considerably, the size of data bases (number of persons tested) has increased, and it is now possible to have one’s whole genome done for as little as $1,000, or a regular DNA test for $100. That sounds very tempting, and could give one the idea that then everything will be known, all relatives, all medical information, all ethnic ancestry down to the country or state where one’s ancestors were born. However, genes are not tiny pictures with labels that say “Kansas City” or “Poland” or “diabetes by age 35.” Although some particular genes have been identified with a geographical region, in some cases a particular religious background, or a particular disability, most results are based on probability and association. When the results come in the mail, or in your e-mail, and you see charts and words like “alleles” and “world population matches” or “low-resolution matches,” you may be bewildered. Maps of the world that are included with symbols for possible matches, in places where you’ve never been, may make you question the whole thing. The explanations that come with the results can help, and some have a glossary of terms used. But you may wonder, “Why does this chart show I have matches in South America when I don’t even know of any relatives there?” “Why does it say my closest match is Romani from Croatia? I was told my family was English!” Again, people migrated across continents and countries is the past, as they still do. Finding that you have one or more markers for “Sub-Saharan African” could mean your ancient ancestors left Africa many thousands of years ago, or depending on the marker, could indicate that you have some more recent African ancestry. If you choose a test that tells you your “haplogroup,” it refers to when your ancestral group left Africa and the route they took, over time, to the rest of the world. The material you receive will have explanations of this. Sometimes, there are awkward surprises. In a recent letter to “Dear Abby,” a man said he had a DNA test just out of curiosity about his ethnic background, and then he ordered test kits for his grown children. The result was that his youngest son, now 25 years old, could not possibly be his son. So now he wonders if he should confront his ex-wife (the son’s mother), tell the son, or keep it all a secret. Abby’s answer was to discuss it with the son privately, assure him of his continued caring, and let the son discuss it with his mother, if he so chooses. Sometimes when an adoptee gets tested, along with an assumed birth father, the results show he is, in fact, not the father, and sometimes the birth mother really thought he was, based on the birth date. Many people break off a relationship, not knowing they are pregnant, or have impregnated someone, and the woman very quickly finds someone else, or has a brief fling. This is part of being human. Two good sources of information about genetic testing for various reasons are Family Tree Magazine, dealing with genealogy, and Genome, a medically oriented journal, dealing with genetic testing for medical issues, including parents having genetic testing before conceiving or after having a child with a particular medical condition. The articles in Genome also discuss ethical issues about testing and resulting from test results. I was able to get a free one-year subscription to Genome after finding it in a doctor’s office and sending in the card in that issue. Both Family Tree Magazine and Genome can be contacted on the Internet, at familytreemagazine.com and genomemag.com, respectively. The best-known DNA testing companies (not affiliated with hospitals) are Family Tree DNA, DNA Consultants, Ancestry DNA, and 23 and Me. Each company uses slightly different methods and has slightly different purposes, so check then all out before deciding which seems right for you, or try one if you wish. All will give you some answers to your genetic puzzle, and none will give you all the answers you’ll ever want or need. Excerpted from the February 2018 edition of the Operation Identity Newsletter |