As the new network television season begins this week, adoptees, NPEs (not parent expected or non-parental events), and donor conceived individuals are among the casts of characters on primetime programs. But will the series’ writers and producers bring a level of reality and depth to the depictions or simply exploit their experiences for dramatic purposes without accuracy, nuance, and sensitivity?

ALMOST FAMILY: L-R: Megalyn Echikunwoke as Edie Palmer, Brittany Snow as Julia Bechley and Emily Osment as Roxy Doyle in Season 1 of ALMOST FAMILY premiering Wednesday, October 2 (9:00-10:00pm PM ET/PT) on FOX. ©2019 Fox Media LLC. CR: Elisabeth Caren/FOX.

On October 2, the first show with a high-concept premise about donor conception premieres on Fox. The plot of “Almost Family” unfolds as it becomes known that renowned fertility doctor Leon Bechley boosted his clinic’s success rate by using his own sperm to help clients conceive—a practice that led to the conception of dozens of children.

While it would appear to be a plot line ripped from recent headlines, the show is based on the Australian Network 10 series “Sisters,” which premiered in October 2017 and may have been inspired by an earlier headline concerning an Indiana fertility doctor who in 2016 was sued for using his own sperm more than 50 times to inseminate patients. The show began streaming as a Netflix Original Series in September 2018.

As in “Sisters,” “Almost Family” focuses on the effect this bombshell has on Bechley’s daughter, Julia, and two women who discover that they were conceived from his sperm. One, Edie Palmer, has been a longtime friend of Julia. The other is a former Olympic athlete, Roxy Doyle.

Both shows purport to be about the redefinition of family and the issues that surface as these sisters face the facts of their conception, navigate the challenges, and encounter an ever-increasing number of siblings.

ALMOST FAMILY: L-R: Timothy Hutton as Dr. Leon Bechley, Brittany Snow as Julia Bechley, Megalyn Echikunwoke as Edie Palmer and Emily Osment as Roxy Doyle in Season 1 of ALMOST FAMILY premiering Wednesday, October 2 (9:00-10:00pm PM ET/PT) on FOX. ©2019 Fox Media LLC. CR: Elisabeth Caren/FOX.

“Sisters,” with 7 episodes, begins promisingly enough. Dialogue suggests that feelings, experiences, and concerns arising from the characters’ discovery that they not only were donor conceived but conceived with the sperm of a fertility doctor will be on point. One of the sisters, for example, wonders if this secret has been the root cause of her lifetime of distress—if it explains why she’s never felt right, why she doesn’t resemble her father. Another sister tangles with a narcissistic mother who tells her she “didn’t miss out on anything” and insists that her life hasn’t changed as a result of this new knowledge. When her daughter tries to make her understand that it has everything to do with who she “is as a person,” the mother dismisses her feelings. Learning of the fertility clinic debacle, Julia Bechley feels as if it’s “just me in a car driving into a tidal wave of shit.” Another feels “shaking, spitting, fury.” One, looking on the brighter side, says, “we’re going to be the people we never knew we were supposed to be.”

If any of that resonates for donor conceived individuals and forecasts a sober exploration of the reality of the situation, what follows may be disappointing. “Sisters” takes a downturn after the first episode, steers away from reality, and devolves into silliness; the drama begins to seem more like an extended sit-com, with the premise as little more than a device for preposterous scenarios in which characters behave unrealistically as they become involved in complications that have little if anything to do with the ramifications of donor conception.

Will “Almost Family” handle the premise more seriously? At the Television Critics Association summer press tour, reporters, according to “TV Guide,” posed hard questions to the new show’s executive producer Jason Katims and writer Annie Weisman. One reporter questioned both an entertainment premise based on “insemination fraud” and the show’s depiction of Bechley as a sympathetic character. Katim asserted that the show focuses on the daughters more than on Bechley’s transgression and on how they connect after the public revelation of his wrongdoing.

Weisman assured reporters that the ramifications of Bechley’s actions and his breach of trust would be taken very seriously. The show, she insisted, will explore questions of identity and what makes a family while exploring the moral and ethical implications. At the same time, Weisman noted that more siblings will emerge over the course of the season, which she describes as “part of the fun of the premise.” Donor conceived individuals understandably might not only take issue with the premise being described as fun, but likely also will bristle at Weisman’s characterization of fertility doctors who broke the rules as outlaws with a visionary sense. It remains to be seen whether “Almost Family” will present a realistic depiction of donor conceived individuals, but the creators’ language doesn’t bode well for a nuanced presentation.Adoption is far from a new topic in network television, but what seems fresh is a departure from the stories in which adoption is the perfect, unblemished solution to babies in need and parents who desire them.

“This is Us”—a wildly popular tearjerker drama—follows Rebecca and Jack Pearson and their three children through flashbacks and flashforwards. It begins in the 1980s as Rebecca and Jack have conceived triplets. Rebecca delivers two healthy babies but the third doesn’t survive. By coincidence, another baby born the same day and whose mother died of an overdose has been abandoned at a firehouse by a drug-addicted father. The Pearsons adopt the child after overcoming obstacles in the legal system; a black judge refused to sanction the adoption of a black baby by white parents because the child would grow up deprived of his racial identity—this taking place decades before transracial adoption had become relatively commonplace and the adoptees’ unique needs were more widely recognized.

The child, Randall, grows up to be a big-hearted, anxious, highly emotional over-achiever. He’s torn between his love for Jack and Rebecca and his longing to know about his biological parents. In his thirties, he discovers his biological father, who’s nearing the end of his life, and learns that Rebecca knew who he was from the start yet kept that knowledge to herself. Plot lines are devoted to Randall’s fury over this betrayal and his ultimate joy in getting to know his biological father—joy tinged with anger about all the years they weren’t able to be together and the sorrow of knowing their time will be short. Oddly, Randall’s biological mother, so far, has been essentially absent from the drama’s flashbacks.

In later episodes, Randall and his wife, Beth, foster and hope to adopt a troubled black adolescent, Deja. Randall, thinking his experience will allow Deja to relate to him and holding firm to a belief that his love will conquer all, comes to learn that good intentions aren’t enough. Deja, seething and self-protective, educates and challenges him at every turn. The story lines highlight conflicted emotions—those of the characters and the audience—about whether the girl best belongs with Beth and Randall or her own mother who loves her.

“This is Us,” the new season of which premieres September 24, has inspired devotion among legions of viewers who believe the adoptee experience portrayed aligns with their own and has scored criticism from a smaller number who find the depiction too simplistic or unrealistic.

Across more than a decade, “Grey’s Anatomy” has highlighted issues related to adoption with a view that’s far from rose-colored. Throughout the seasons of the show—the 16^th of which premieres September 26—conflicts related to adoption are featured frequently. Early on, lead characters Derek Shepherd and Meredith Grey adopt Zola, a six-month old orphan whom Derek had treated at a clinic in Malawi, a process complicated by upheavals in their relationship.

In season 10, a brilliant new cardiovascular surgeon, Maggie Pierce, comes to work at Seattle Grace Hospital. She’s learned that her birthmother, Ellis Grey, a world-famous surgeon, had worked there years ago. What she doesn’t know is that Ellis’ daughter, Meredith, is her half-sister, or that the chief of surgery, Richard Webber, is her father. Webber figures it out first and, to keep the affair he’d had with Ellis from becoming common knowledge, he fails to inform Maggie. As the truth emerges, Maggie’s reunion with her biological family is anything but idyllic. It’s fraught at every turn with issues of trust and betrayal. As Maggie becomes a more prominent character in the drama, her loneliness and lifelong struggles to fit in, her awareness of having missing pieces, and her difficulty with relationships become apparent.

Jo Wilson, another surgeon at the hospital (now called Grey-Sloan Memorial) had been abandoned by her mother shortly after her birth. Story lines make evident that everything in Jo’s experience has been difficult—that her life’s beginning has created heartaches and challenges few can understand. She’s thought about her mother every day of her life and wondered about her own genetic identity. She wrestles with shame and fear of abandonment, which cause her to leave others before they leave her and fuels feelings of inadequacy and otherness. Despite a traumatic upbringing in foster care and an adolescence on the streets, she managed to become a doctor and to flee an abusive husband, creating a new identity for herself. In the most recent season of the show, Jo, having no medical history, is afraid to have children for fear of passing on genetic illnesses. To learn more about her health risks, she takes a DNA test and subsequently discovers the identity of her birthmother. She tracks her down and is devasted to discover that she’s not welcome in her life and, worse, is deeply traumatized by the reason for her mother’s rejection—that she was conceived as a consequence of rape.

GREY’S ANATOMY – on The ABC Television Network. (ABC/Eric McCandless)
CAMILLA LUDDINGTON

These programs may not deal with the full complexity of adoption and foster care and may leave viewers with much to praise and much to criticize, but the characters register emotions that seldom have been expressed in previous screen portrayals. There’s grief, anguish, fear, heartache, conflict, guilt, shame, anger, and rage. There’s acceptance and rejection and happy reunions and bitter disavowals. There are identity crises and traumas associated with the loss of biological family and genetic identity. And in each situation, adoption and foster care aren’t events characters get beyond. They’re shown, instead, to have deleterious effects that persist throughout life.While adoption has been a through line in many television shows, NPEs probably haven’t had a significant presence on a network hit since “Peyton Place” in the 1960s. Until now. With a “Big Chill” vibe, ABC’s drama “A Million Little Things,” is about the friendships among a circle of individuals linked by their relationship to Jon Dixon, the group’s linchpin who died by suicide in the first episode. While the series hasn’t yet focused long and hard on issues of genetic identity, it appears to be poised to do so in the second season. The first season episodes set the stage for the potential development of a non-parental event, depicting the way an NPE situation can arise and how the secrets and lies begin.

A MILLION LITTLE THINGS – ABC’s “A Million Little Things” stars Lizzy Greene as Sophie Dixon, Stephanie Szostak as Delilah Dixon, James Roday as Gary Mendez, Allison Miller as Maggie Bloom, Chance Hurstfield as Danny Dixon, Christina Moses as Regina Howard, Romany Malco as Rome Howard, David Giuntoli as Eddie Saville, Grace Park as Katherine Kim, and Tristan Byon as Theo Saville. (ABC/Robert Trachtenberg)

Before Jon dies, his wife, Delilah Dixon, had begun an affair with Eddie Saville. Delilah and Eddie had planned to tell Jon, but before that could happen, Jon had taken his own life. Soon after, Delilah discovers she’s pregnant. Delilah tells Eddie there’s no question she’s carrying his child—that she and Jon had drifted apart and hadn’t been intimate since before the baby was conceived. As Delilah and her two children are reeling in the aftermath of Jon’s death and Eddie is trying to rebuild his relationship with his wife, Katherine, the two agree the child “must be Jon’s.” This pact—the beginning of a family secret—is seen in part as an act of love and protection. In light of the timing, while everyone is mourning Jon’s death, these characters are meant to appear sympathetic and selfless. This agreement is made to protect Delilah’s children and Eddie’s marriage. Clearly, of course, it’s also an act of self-protection—a means of avoiding the revelation of their affair and sidestepping their shame. It’s a promise of secrecy that, by the first season finale, is on the edge of being broken. But there’s more than one NPE situation at play in this drama.

“A Million Little Things,” on The ABC Television Network. (ABC/Jack Rowand)
STEPHANIE SZOSTAK, DAVID GIUNTOLI

The finale not only teases the eventual revelation of that secret but it also suggests that Delilah and Eddie may be influenced to come clean when they encounter an NPE and become aware of the trauma he experienced as a result of not knowing about his origins. In a complicated plot twist in this pivotal episode, it becomes apparent that a troubled and possibly depressed young man named Patrick—the son of a woman who had been a friend of Jon’s—is an NPE. As this revelation unfolds, Jon, in a video, appear to foretell the struggle that will play out over whether Delilah and Eddie keep their pact or tell the truth and prevent their child from becoming an NPE. “The more you try to push away the past, the more it haunts you,” Jon says. “And sometimes, as hard as it may be, you tell the truth,” he adds. The second season premieres September 26 on ABC.In the end, what does it matter if the shows get it right? It’s just television, and no one expects reality from network programs. That may be true, but television depictions drive cultural perceptions for good or for ill and form the basis for tropes that live on indefinitely unless they’re challenged. If you’re an adoptee or NPE or were donor conceived, you can influence the way you and others like you are represented in the media. It’s a long game, but raising your voice can be effective over time. At the highest level, you can change the media and control the narrative by contributing to it—by trying to get your voice and vision out there. If you have a gift for writing, research television writing and learn how the business works. Get a foot in the door by writing spec scripts. There’s an abundance of excellent books on the process, for example, Alan Heuth’s “Scriptwriting for Film, Television, and New Media,” and courses in television writing are widely available, for example at UCLA Extension, NYU, and Columbia School of the Arts. There’s even a free course from Coursera.

True, getting a script out in the word is easier said than done, but it’s not impossible. And it’s not the only way to influence the media. If you believe that issues related to genetic identity are misrepresented on network television or that characters are unrealistic or lack dimension, raise your voice. Media is influenced by the public’s reaction. Write to the networks and detail your objections. Send letters to the editors of national and local newspapers or write opinion pieces for these publications. Tell them what the media are getting right and what they are getting wrong and why it matters. The more you are able to control the narrative about the issues that matter to you, the more the public will reject the tropes, see dimensional human beings, and understand their experiences.

By B.K. JacksonMost of the losses we experience in life require little explanation and are universally recognized and understood, such as the death of our loved ones. They were among us — and then they weren’t. We may have witnessed their transition from life to death, from breathing to not breathing. We may have seen their bodies lowered to the ground and have attended ceremonies acknowledging the gravity of our losses. We miss the dead, mourn for them, and are comforted by others who understand and may grieve with us. Over time, the sadness over their absence, while it may never evaporate, dissipates.

But some loss is less clear, even more distressing, and may last forever. Ambiguous loss is the traumatic loss of a person, a relationship, or even the desire for a relationship, for which there is no possibility of closure. The term may also pertain to a problem that can’t be solved or a situation that has no resolution. Pauline Boss, a family therapist, educator, and researcher who coined the term ambiguous loss in the late 1970s, describes it as a type “that has no validation and no body to bury. It’s a situation that leads to disenfranchised grief — grief that society doesn’t know what to do with or discriminates against.”

There are two types of ambiguous loss. One arises in situations where there is a physical presence but a lack of psychological presence, for example, when a loved one has dementia or is emotionally unavailable. The other type, conversely, emerges when there’s a psychological presence but a physical absence, such as when a death is presumed to have occurred but there’s no body, as was the case for many of the individuals with whom Boss has worked — loved ones of pilots missing in action in Vietnam, victims of 9/11 who were never identified, and individuals presumed dead after the catastrophic tsunami that struck Japan in 2011. The ambiguity is caused by a lack of information about the loss.

It’s this second type of ambiguous loss that’s commonly experienced by individuals who’ve been stripped of information about their genetic identities, whether as a result of adoption, donor conception, or other circumstances of misattributed parentage.

According to JaeRan Kim, PhD, MSW, assistant professor of social work at the University of Washington Tacoma, also falling under the umbrella of ambiguous losses are “any circumstances where what you think you understand about a relationship turns out to be unclear, misleading, or unknown.”  Adoptees who find out later in life they were adopted, for example, “often feel a sense of betrayal by their parents and may question everything about their relationship,” she says. “They may also experience the loss and uncertainty about their birth/first parents — who they were and what became of them.” The same is true for NPEs (non-parental events or not parent expected) and donor conceived people. Ambiguous loss, Kim adds, is also about the inability or failure of others to acknowledge that there’s sadness or grief over the loss.

More important to consider for adoptees, says Kim, “is whether they have specific information about the adoption circumstances, the reasons for their relinquishment, and the knowledge that their birth/first families are okay, and if there’s been some sort of sense of peace about that loss. It’s also necessary to consider if the adoptive parents were open about including the birth/first parents and families in their lives, even if only in symbolic ways.” Ambiguous loss, she says, “is more difficult to manage if adoptees feel it is not safe to voice their thoughts and feelings about wanting to know more about the circumstances that led to their adoptions and if they are shamed or shut down if they question or mourn the loss of their birthparents.”

For adoptees and NPEs, the lack of information about their origins creates ambiguity when they can’t identify a birth parent, can’t locate a biological family member they have identified, or learn that a biological family member they’ve never met has died, shattering the dream that one day they will connect. In each case, there’s a loss of the promise of a relationship that doesn’t yet — and may never — exist. It’s heartbreaking in these cases of lack of information about genetic identity, Boss says, because there are multiple layers of loss and ambiguity. Individuals may feel shattered by the death of birthparents they’ve never met, feelings further complicated when they’ve been rejected or shamed by their birth or social families.

These losses, Boss writes in her 2000 book, “Ambiguous Loss: Learning to Live with Unresolved Grief,” are “always stressful and often tormenting.” They’re the most devastating and traumatizing of losses because sufferers must live with ambiguity that might stay with them throughout their lives. She illustrates her point, quoting from an old English nursery rhyme, with an example certain to resonate with anyone who grieves an absent parent:

As I was walking up the stair,

I met a man who was not there

He was not there again today

Oh, how I wish he’d go away

While some people have higher thresholds of tolerance than others for ambiguity, most people find it deeply disturbing and stress-inducing. It’s difficult to move forward when you don’t know for certain if the loss is permanent and when there are no rituals for mourning the loss. Those who’ve never experienced an ambiguous loss may not understand the depth of the pain or the level of stress it arouses.

Boss observes that among the many potential consequences people suffering ambiguous losses may experience are:

• a freezing of the grief process
• a sense of being stuck in limbo
• an inability to make sense of the situation or to make decisions
• depression, anxiety, and substance abuse
• feeling immobilized
• exhaustion, hopelessness, and helplessness.

These symptoms are similar to those of complicated grief but are the result of ambiguity, not death.If you’re struggling with an ambiguous loss, you may consider seeing a therapist. But, according to Boss, that’s not always helpful. Therapists, she explains — particularly psychologists and psychiatrists — often focus on inner psychiatric issues, but in the case of ambiguous loss, there are none. She characterizes ambiguous loss as a stress-based problem and uses a non-medical approach to distinguish it from a pathology. “It’s not like you have a mental illness such as schizophrenia or bipolar disorder. You don’t have to adjust to a disease that’s inside you,” she explains. “The pathology lies in the situation, not in your psyche. If you experience distress over an ambiguous loss, there’s nothing wrong with you, but there is something wrong with what happened to you,” she says. “The problem is that you’ve been dealt a card that was not your fault, and now you have to try to figure it out, but there may be no answer.”

That’s not to say that a therapist isn’t ever necessary or can’t help. If you need a high degree of control in your life, you might spend all your time digging and digging for answers and not living your life, Boss says. A therapist can help you change course, but you must choose one who understands that the problem lies in the context of the situation, not in the inner workings of your mind. Perhaps surprisingly, grief therapists might not be the best choice, because they’re trained to deal with loved ones who are dead — with the certainty of death. But you may not have that. Further, unless they’ve specifically been trained in this particular kind of loss, Boss says, therapists may try to put a timeline on your grief, but with ambiguous loss, “there is no timeline. It’s a forever thing.” Look for a family therapist or a social worker, she advises, because they’re trained to look systemically at your environment, at the context, and at what happened to you.

And don’t look for comfort in knowledge of the five stages of grief, Boss adds. It’s a concept that’s been widely misunderstood, taken out of its original context, and generally accepted even though there’s no evidence that it has merit. Society, and especially American society, loves the idea of these stages, she says, because they promise a way to get over it, to gain what she calls the myth of closure. “It’s an ugly word, closure. I don’t believe in it. It doesn’t exist, and why should it? It’s not needed.” The idea that we need to get over loss and move on is cruel, she says, because we now know that we need to learn to live with grief, even when there is a death.If your loss remains in your thoughts, that’s understandable, but it shouldn’t control your mind, Boss says, because then it becomes an obsession.

In her 2006 book, “Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss,” she lays out guidelines therapists can use to help individuals suffering ambiguous losses. But there are a number of things you can do on your own. Not that there’s a simple fix. Or even any fix. The solution is a matter of increasing your tolerance for, and comfort with, unanswered questions.

Once you acknowledge the losses and recognize they’re ambiguous, there are two key goals: learning to accept the ambiguities instead of struggling against them, and mitigating the stress the losses cause. The challenge is not to get over ambiguous loss, because that’s impossible, but to get used to it, to increase your resilience and learn to be able to live without knowing and move forward despite an ongoing mystery.

Accepting ambiguity, Boss admits, isn’t easy. “We live in a society that’s mastery-oriented. We want the answers, otherwise it’s as if we’ve failed. We have to fight that societal pressure for certainty, for answer to all questions.” She likes the idea that we’re a can-do society, but there are some questions that have no answers and may never have answers.

The way forward isn’t controlling and overcoming, it’s surrendering. “It’s sort of a mind game to live with unanswered questions, but it helps to lower the stress or anxiety associated with the ambiguity,” Boss says. One method she recommends is meditation. “It’s always good, but it’s especially helpful when you’re faced with questions you can’t find an answer to. It helps you lower the need to control and find answers.” Searching for certainty has a lot to do with a need for control and mastery, which often serves us well, but when there are no answers it’s self-defeating. “I think we have to consciously, mindfully, say, ‘I will not be able to find the answer to this,’ or maybe, ‘I found the answer and I don’t like it, but I have to be able to make that less important so it doesn’t control my life.’”

Part of the solution is deciding to accept the ambiguity using both/and thinking, which Boss describes as holding two opposing ideas in one’s mind at the same time. It’s a way of acknowledging that there may be more than one way to look at something, and though the views may be contradictory, they are both true. A woman who was abandoned by her mother, for example, might say, “I both will never know my mother, and I have loving mother figures in my life.” Another example, Boss says, is, “I am both sad about my lost hopes and dreams, and happy about some new ones.”

In large part it’s a matter of “learning to live in the now, of acknowledging and recognizing for yourself that there’s a part of your past that you’ll never claim, and although that’s not okay, it’s something you can live with,” according to Kathleen R. Gilbert, PhD, professor emerita in the Department of Applied Health Science, Indiana University School of Public Health-Bloomington and an Association for Death Education and Counseling Fellow in Thanatology (FT).

If you’re in the grip of an ambiguous loss, these coping strategies may sound either far too difficult or much too simplistic, too paradoxical. It might be hard to hear that the solution to ambiguity is acceptance. But, as the experts indicate, there’s no way to create certainty in an inherently and invariably ambiguous situation. Continuing to obsessively question and wonder about things that can’t be known, says Gilbert, “trying and trying to find answers when there are none is like a fool’s errand.” It’s frustrating to hear, she admits, that the answer may be “mindfulness, centering, accepting, and giving yourself permission to be okay in this present moment with where you are and what you know.”  It may make you want to throw up your hands and scream, she says, but the only way to ease the suffering is to learn to react differently.

It’s also helpful to find creative outlets, both to reduce stress and help make meaning when meaning is difficult to grasp. Boss recommends arts-related activities and storytelling. Journaling and creative writing are extremely helpful, she says, as are painting and physical activity. “Movement is exceedingly important to work out stress. It’s a Western idea that you need to sit in a chair and face a therapist. It’s not always the best thing to do.” Sitting in a therapist’s office, for people who have been traumatized, may be less useful than if the therapist would go for a walk with them. You can explore these activities on your own or look for an arts, music, or movement therapist to guide you.

These activities, says Gilbert, may be among the ways you can make meaning when there seems to be no meaning, to make sense when things don’t seem to make sense. It’s about coming up with an explanation you can live with. “It’s not about a broader, deeper, more philosophical meaning — that’s what a lot of people think when they use the term meaning.” Instead, she says, “You’re looking for something that can help calm you and let you live your life in the world with the information you have. The question is, how can you reframe everything in a way that makes sense to you and that lets you go forward?”

Talking to other people who’ve had a similar experience is helpful as well, says Gilbert, “not necessarily to look for advice or direction, but just to toss around ideas and hear what other people have done, how they’ve made sense of things, and how they’ve functioned.” And in return, being able to help others is another way of making meaning.

Grieving, Gilbert concludes, “is really an external expression of an internal process of trying to get to be where you can live with the reality you’re in now.” When you boil it down, Boss agrees, adapting to ambiguous losses comes down to this: “We can’t always have what we want, and we can learn to live with that. Hopefully you get 90% of what you want, and I think we can adjust our coping style and build our resistance to live with even that 10% we can’t have.”

On an October day in 2016, Adrian Jones set out on what was for him a common pastime — a strenuous mountain bike ride with friends. Midway up a steep grade, Jones — who by all appearances was fit and healthy — began experiencing alarming symptoms including extreme fatigue, nausea, lightheadedness, and, ultimately, chest pain. His friends rushed him to Marin General Hospital, oddly the same place where the adoptee had been born almost 47 years earlier. There, he was diagnosed as having had a “widowmaker” heart attack, his left anterior descending artery having been 100% occluded.

Grateful to have survived this typically lethal heart condition, Jones heeded a voice he heard when he was in the ICU. It said, “Find your birth parents!” With the help of a genetic genealogist, he did, and he discovered that heart disease runs — gallops — in his family, having killed an uncle at age 52 and both of his maternal grandparents, his grandmother at 65 and his grandfather at 71.

Jones’ story illustrates why having a family medical history is essential. Had he known what he now knows, he would have been able to undergo appropriate screening and might have been able to detect a problem before it had the potential to become lethal.

Although many of us are blocked at every turn when trying to gather information about our inherited health risks, continuing to do everything possible to obtain such information — including advocating for the right to have it — is crucial. But until you’re able to know more about the potential issues that may be a part of your family’s legacy, DNA testing may be the only path you can take to improve your awareness of your genetic risks and minimize them.For most humans, the bulk of our DNA is sequenced similarly. A small percent of our DNA — roughly 0.5% — differs. Within that 0.5% are the genes that influence our risks for various health conditions and diseases. Though knowledge of DNA sequencing and the human genome in general has advanced tremendously, making it possible to detect vulnerability to many heritable diseases, there remains much that’s unknown. Thus, while DNA testing can help indicate possible health risks, at worst it’s imprecise and can be misinterpreted and at best it doesn’t provide the full picture. Understand going into it that it won’t give you a road map to your future health, nor will it diagnose disease. But it may permit early detection of diseases and in some cases can be a lifesaver.Although there are now many companies that offer direct-to-consumer (DTC) DNA tests, the best known of these, 23andMe, was the first to receive FDA approval to market tests providing information about genes influencing health and disease. Recently, another of the leading genealogical testing companies, MyHeritage, has begun offering a health test. The tests look for genetic variants called single nucleotide polymorphisms (SNPs) that are associated with risk for developing a number of diseases, including Parkinson’s disease, age-related macular degeneration, early-onset Alzheimer’s disease, and breast cancer. They also show whether you have a genetic variant (once known as a mutation) that may contribute to diseases you can pass on to your children, such as sickle cell anemia or cystic fibrosis. If you have one copy of a gene variant associated with a condition, you are a carrier. A child whose parents both have that variant will develop that genetic disorder.

But these tests don’t tell the whole story and don’t examine all genes that influence disease risk.

Before selecting one of these tests, especially when considering one from a lesser-known business, research the company’s track record, look at the credentials of the team, and ensure that you’ll have access to representatives who will answer all your questions. Look for guidelines about choosing a DTC test from the National Institutes of Health’s National Library of Medicine.If you’ve taken an autosomal DNA test for genealogical purposes, you can download your raw DNA file, which contains a sampling of your DNA. Then you can download that information to any of a number of services, such as Promethease, LiveWello, or Sequencing, that will use that raw data to generate health reports, in many cases involving many more conditions and risks than those addressed by the major DTC tests and in far greater detail. The results, however, can be both bewildering and anxiety-provoking. I’ve uploaded my DNA to each of these companies and, despite having been a health journalist for many years, I find the reports both difficult to understand and somewhat alarming. Even if you have a science background as well as the time and motivation to learn to how to interpret the findings, you may believe you understand the results, but it’s likely that without the assistance of a genetic counselor you may misinterpret the findings, and the consequences can be serious.

In addition to these third-party tools, new programs and apps are appearing almost daily that purport to tell you how to best eat, exercise, sleep, and even age based on your DNA. These may offer results pertaining to such traits as metabolism, muscle strength, sleep, and nutrient absorption. They may be interesting and entertaining, but their science base is questionable and they’re of little use if you’re looking to fill in the gaps of your knowledge about health risks. And as with everything, it’s a question of buyer beware. It’s a caveat that’s especially important when these companies also aim to sell you supplements, programs, or other products they claim are individualized to your specific needs as indicated by your genes. The evidence for the effectiveness of the DNA analysis and of the associated programs and products in many if not most cases is lacking.All of these DTC approaches have benefits and limitations, the former being chiefly that they’re simple, noninvasive tests that may allow you to become aware of health risks before a condition develops and to take preventive measures or they may point to existing conditions and lead you toward prompt treatment. They generally are less expensive than medical-grade tests and typically do not require recommendation by a physician. However, the gap is closing, with some newer, more affordable medical-grade options, such as tests by Invitae, Color Genomics, and some of the Helix tests, says Kirkpatrick.

Sadly, the list of the limitations of DTC testing is much longer:

Genes are only part of the picture. Just because a condition may run in your family doesn’t mean it’s truly all in your genes. Your genetic inheritance is just one component of disease risk. Also influencing your risk are your environment, your lifestyle choices, and the interplay of multiple genes. Moreover, although your genes don’t change with time, the knowledge about them and available testing options do. “Most genetic variants that are associated with disease are actually not predictive, meaning we can test for a condition but it doesn’t mean that condition is going to develop because there’s a lot more complexity to disease development,” says Kirkpatrick. A condition such as type 2 diabetes, for example, “takes more than 1,000 different markers and environmental exposures to develop, so it’s not just a one-gene, one-condition situation, and most diseases involve multiple genetic variants in multiple different areas. Individually, each of the markers may only have a small impact on the risk, but all together they can influence a person’s risk to develop that condition,” she explains.

They may provide false reassurance and arouse unnecessary worry. Consumers typically lack adequate information to allow them to interpret the results accurately and may believe, incorrectly, that because a test doesn’t flag any variants for a particular disease, they have no risk for that disease. The opposite is also true. They may see one or more variants flagged for a particular condition and assume it means they will develop the disease, when in fact the results do not, and cannot, indicate that. Genetic testing may reveal information that might be alarming, confusing, or that you simply might rather not know. If your test reveals a gene that contributes to a deadly cancer, for example, without additional information and context, you might experience a great deal of anxiety. As noted earlier, that anxiety might be misplaced, since that gene alone is no real indication of your risk and because false positives are not uncommon.

They support confirmation bias. This is when a test appears to confirm something one is expecting or hoping for. It happens frequently, particularly with reports from third-party assessments, says Kirkpatrick. Almost all of those reports, for example, she says, will flag some gene entries for breast cancer, colon cancer, and dementia. “Everyone has variants in their reports for all of these hundreds of conditions, and if they have them in their family histories, they’re going to think these tests have identified the genetic reason, but it’s quite possible that the genetic reason in that family wasn’t even on the test.”

There’s a risk of discrimination. While the Genetic Information Nondiscrimination Act of 2008 prevents employers and health insurers from discrimination based on DNA findings, that protection is not automatically provided when it comes to life and long-term disability insurance. The Genetic Non-Discrimination Act similarly protects Canadians.

The tests are not comprehensive. Perhaps the most significant limitation of most DTC tests is that they only look for certain variants within the genome — a method called genotyping. Kirkpatrick describes it as being “like playing a game of hopscotch down the DNA, where it looks at spots here and there but isn’t really complete.” It might pick out a variant that influences your risk for a condition, but there may be thousands of others it doesn’t look at. The more comprehensive approach used in tests given by healthcare providers is known as sequencing, which looks at longer stretches of DNA or even the entire genome. This difference may be of particular concern when it comes to certain conditions such as breast cancer. For example, some DTC tests look at only a few of the thousands of variants in the two breast cancer genes called BRCA1 and BRCA2, variants that tend to be found in people of Eastern European descent.

Finding these variants is important, because both women and men with one of these variants have a higher risk of developing certain cancers. The danger is that if these DNA tests do not reveal the presence of one of these other variants, consumers might think they’re in the clear and not only may pass on further genetic testing but also may slack off on routine breast and prostate care.

Even if a woman doesn’t have one of the variants flagged by these tests, it doesn’t mean she won’t get breast cancer. She still might have one of the many variants not tested for, variants that might put her at increased risk for breast and ovarian cancers. Furthermore, genes are not the only factors that influence whether she might develop the disease. 23andMe explains these pitfalls to consumers and encourages women — and in fact all customers — to consult with a genetic counselor before testing, discuss findings with their physicians, and consider further genetic testing.

“I’ve seen people falsely reassured when they really aren’t understanding that the raw data files are not looking at the entire BRCA1 gene, for example.” They don’t realize they could still have a genetic variation that’s not included in that raw file, Kirkpatrick explains. Furthermore, she says, the raw data analyzed is different from one company to another, and even individual companies have more than one version of their test, so the information that’s extracted for download and then uploaded can vary and have different markers.

Furthermore, tests don’t yet exist for all conditions that can be genetic in origin or for all genes pertaining to a particular disease.Because of these limitations, it’s wise for everyone taking DTC tests to discuss their findings with a certified genetic counselor — an expert with deep training in genetics and counseling — before dismissing, worrying about, or acting on results. And in cases in which a test indicates a risk for a disease, it’s necessary to validate those findings through medical-grade testing. You might be tempted to bring your results to your next medical appointment, but in many cases primary care physicians aren’t aware of all the tests and aren’t necessarily able or willing to evaluate them.

Kirkpatrick advises everyone who gets results from third-party sources to work with a genetic counselor who specializes in DTC genetics. “If you’ve found a particular variant you’re anxious about, we always recommend doing confirmation testing — repeating the test, but in a medical-grade laboratory setting.” About half the time, she says, the finding will not be confirmed.

It’s advice that even the leading DTC testing companies give. 23andMe, for example, advises all customers to seek such genetic counseling before taking an at-home DNA test and to follow up with medical-grade testing when findings indicate a risk. If costs are an issue, first talk with your doctor and your insurance company to see if you may be covered.

To find a genetic counselor, ask your physician or visit the National Society of Genetic Counselors, which has a directory of more than 3,300 practitioners.While DTC tests may give you some information about your health risks, they are less complete and in many cases less reliable than those you’d get from medical-grade tests chosen with the help of a genetic counselor. Unfortunately, many consumers aren’t aware there’s another type of DNA testing available to help assess their risks. Unlike most DTC DNA tests, medical-grade tests must be recommended or ordered by a healthcare provider and in many instances are covered by insurance. For individuals without a family medical history who suffer from mysterious symptoms or have developed health conditions, such medical-grade diagnostic tests can provide valuable information that will help physicians explore additional testing and target treatment methods.

For those who take medications for certain conditions, pharmacogenomic testing (PGx) examines genes that contribute to the way you will respond to a particular medication and whether you’re likely to have adverse reactions. This is helpful, for example, to guide dosages for people taking warfarin to reduce risk of stroke or to predict adverse effects in those taking statins to lower cholesterol.

Another type of testing, proactive screening, as the name suggests, looks for variants in genes known to be linked to diseases about which individuals can be proactive — those that can be influenced by behaviors or treated when detected early. This newer type of testing, which is largely not covered by medical insurance, is not yet widely used. “Most people don’t know how to navigate the system to access the testing, and the tests haven’t been around long enough for there to be widespread understanding of their value,” says Kirkpatrick.A potential game-changer in testing is a new program called My Gene Counsel, which, according to Kirkpatrick, is trying to help people access reliable genetic information and receive confirmation testing on a mass scale. According to the company’s website, its team of “genetic counselors, scientists, and patient advocates have created streams of information to answer the questions you and your doctor have about your genetic tests results and how to use them.” The company links your results to those streams of information and shares reports with you and your healthcare provider, updating you as new information emerges and recommendations change.

According to the company’s president and CEO, Ellen Matloff, the program “allows people who have had DTC testing and have a personal or family history of cancer to get information about their health results and do verification testing in a medical-grade laboratory, if needed.” It’s recently expanded, she adds, to include people who either have a personal and/or family history of cancer and have not had DTC testing, or who have no such history but who have had a cancer-related finding via DTC testing. The program includes genetic counseling by phone by a certified genetic counselor. This program is also innovative because as the science of genetic testing evolves and results shift, it will keep consumers up to date about what these changes mean to their health.

Another company, Invitae, says Kirkpatrick, is “helping push medical-grade testing into the DTC sphere. According to the company, “The new service allows consumers to initiate and order tests themselves, and then be paired with a trained, independent clinician who reviews health history and determines the medical appropriateness of their test. Once results are available, the service provides support on next steps, including genetic counseling as appropriate, and also makes it easy for consumers to share their results directly with their personal physician.” This approach is similar to MyHeritage’s decision to include healthcare providers in ordering and helping return results regarding medical information to customers, says Kirkpatrick.Genetic testing, when results are interpreted correctly, may be a boon to individuals who don’t know who their biological families are and who, thus, are in the dark about their health risks. However, it gives only a partial picture of the risks. Melanoma, Kirkpatrick explains, is an example of a condition for which family medical history is as important, if not more important, than the genetic testing. There are several types of melanoma, she explains, some of which run more strongly in families than others, but testing hasn’t yet been developed for all cases of familial melanoma. “So if you have a family history of melanoma, it’s important to know that so you can have annual skin checks and pay more attention to any concerning skin findings, not putting it off if something develops.”

Family medical history matters, and Kirkpatrick encourages everyone to take all steps possible to learn about it. Adoptees, for example, can attempt to gain non-identifying information from the agencies or states responsible for their adoptions. And those who were adopted in the minority of states that allow access to original birth certificates can use the information those certificates contain to try to track down their biological parents. Donor conceived individuals who don’t have access to family medical history and NPEs (non-parental events or not parent expected) who also lack information may have no means other than DNA testing for searching for their biological families. Kirkpatrick offers step-by-step strategies for using DNA to find family along with a thorough discussion of medical DNA testing in her new book, “The DNA Guide for Adoptees: How to Use Genealogy and Genetics to Uncover Your Roots, Connect With Your Biological Family, and Better Understand Your Medical History.” The tips she and coauthor Shannon Combs-Bennett offer, although targeted to adoptees, will be useful as well to help donor conceived individuals and other NPEs find family.

By B.K. JacksonWhen Julie Lopez was born, she was removed from her first mother and taken to an orphanage, where she lived without a primary caregiver for two months until she was adopted. She had a good upbringing in a loving home, yet for much of her life was troubled by puzzling symptoms. At one point, for example, she experienced dizzy spells and disorientation that made her feel “as if time moved out of space.” She went to a neurologist who prescribed medication for what he believed to be extra electrical activity in her brain. “My life was pretty great, so some of the symptoms I had were inexplicable to me.”

It’s a phenomenon she believes is common among people who believe their early lives were essentially carefree. After working with a therapist skilled in brain-based therapies, she came to know that some of her symptoms were triggered by behavior-influencing codes stored in her implicit memory — the memory that can’t be consciously accessed. As a result of that therapy, the symptoms dissipated. Lopez attributes much of her own personal therapeutic success to those early experiences with brain-based work.

Cracking those codes is the subject of her new book, “Live Empowered!: Rewire Your Brain’s Implicit Memory to Thrive in Business, Love and Life.” There, she explores how these memories, which normally help people function efficiently, can become tripwires, setting off cascades of negative emotions and destructive symptoms.How can you be affected by experiences about which you have no memory or that happened before you were able to understand and express them through language?

It all begins in the hippocampus, a part of the limbic system, which controls the autonomic nervous system. It’s the part of the brain “responsible for coding and putting date and time stamps on our explicit memory — the memory we can consciously recall,” says Lopez. There are four circumstances during which information is stored in implicit memory.

1. When an individual is in the first three years of life, before the hippocampus is fully developed
2. Following a physical brain injury that damages the hippocampus
3. When stress levels are high, cortisol levels rise, and the hippocampus shuts off
4. When bodies dissociate from the experience of extreme trauma and the hippocampus similarly shutters.

Implicit memory, says Lopez — founder of the Viva Center, a Washington, DC community of therapists specializing in brain- and body-based therapies and a trauma-informed approach to healing — is a concept developed in the early 1900s by a number of scientists in different disciplines to explain how our systems hold data that we don’t consciously remember.

Every human, says Lopez, has implicit memory, which she describes as a hidden control panel in the brain — not one you can consciously direct, yet which holds all the data that informs how we live. “Everything stored in implicit memory is there to help us in our most primary function, which is to survive and to excel.” Although we can’t directly tap into this vast reservoir of experiential data, it nonetheless influences our behavior and wellbeing, both positively and negatively.

Suppose, for example, there had been a time you felt unsafe during your infancy and that period of danger coincided with a terrible windstorm. Those experiences were encoded in your implicit memory. Now, when a strong wind blows, you may feel your heart rate rise, your palms sweat, and your breath quicken — reactions that may make you afraid of going outside. You don’t remember the inciting event or the windstorm. All you know is that when the wind kicks up, it stirs strong emotions. Or perhaps you were terribly frightened in infancy by a man with a big bushy moustache. Even now, without knowing why, you may recoil from anyone with similar facial hair. These implicit memories can be triggered by any sensory information — a scent, a color, a sound, or anything felt or observed.Infants and babies taken from their birthmothers tend to perceive that severance as a danger, a threat to their well-being. The physical sensations associated with being removed from their mothers and the consequent feelings of being unsafe are stored in the body and the mind as implicit memories — remnants of trauma that remain and can cause distress throughout life. But because individuals don’t understand these as memories — that is, as narratives they can express — they may not identify their experiences as traumatic or link their distress symptoms to these early preverbal experiences.

The loss of a primary care person, Lopez explains, is significant, and deprives a child of mirroring (when a parent reflects a baby’s emotions as expressed by voice or expression) and attunement (a sense of safety that develops when parents are responsive to an infant’s needs). Often, those who didn’t have those primal experiences have symptoms of anxiety related to friendships and intimate relationships. “That struggle can look like any part of the classic symptoms for PTSD,” says Lopez. “It doesn’t mean they meet the diagnostic criteria, but they’ll exhibit avoidance of things associated with vulnerability in relationships.” Other symptoms may include flashbacks, nightmares, dissociation (a sense of separation or disconnection from oneself), anxiety, and depression. They may rely on coping strategies to avoid having to be close, such as excessive drug or alcohol use or other types of behavioral addictions that help them avoid what they see as threatening.

“There may be codes that are put in our brains that tell us the way to get through life is not to attach to people, because when you really attach, you get hurt,” says Lopez. Many people who’ve had great losses in their lives or in relationships, she adds, have had those types of codes embedded without being consciously aware of it. She’s worked with clients who say they want a relationship, yet their behavior tells a different story because of those codes. Thus, for reasons they can’t understand, adoptees may fear being abandoned, be unable or afraid to securely attach to others, or find it difficult to trust people.

Similarly, those who were not raised by their genetic parents, even though they may not have been aware of that fact until adulthood — NPEs (non-paternal events or not parent expected), donor conceived people, late-discovery adoptees — also are likely to have been imprinted with memories about which they have no conscious awareness and which may cause dis-ease. They may react in ways they don’t understand to people, places, sights, sounds, smells, or other sensations associated with childhood experiences.

NPEs and others also may have stored sensory data from subtle or outright signals they observed that indicated they didn’t belong, were unwanted, or were a source of conflict between their parents — sensations that may stimulate feelings of disconnect, alienation, and inauthenticity. “When a child grows up without genetic mirroring and in situations in which there is deception — when the parents are actually sitting on a secret — the child picks up on data energetically, in a nonverbal way, and those pieces of information can be stored in implicit memory,” says Lopez.

Furthermore, she adds, “There are some physical and visceral experiences that go along with being disconnected from people that you’re related to.” Although in her practice she most often sees clients with expressions of anxiety, others may present with feelings of hopelessness and despair. There may be uncomfortable bodily sensations and symptoms such as those associated with obsessive-compulsive disorder, “where they have a compulsive drive to put things where they belong or keep things in order or a difficulty handling stress either personally or professionally. They may have overly controlling behavior because it feels scary to loosen the reins on relationships.”

They don’t grasp that they’re being triggered by unconscious memories. It’s as if they’re being sent signals that they can’t  see, hear, or understand. So the feelings their memories engender may seem to make no sense and to be incongruous to the situations in which they arise. And when symptoms occur, clients have no reason to suspect they’re linked to past experiences. But, says Lopez, symptoms are always telling a story. The question, she adds, isn’t what’s wrong with you, but what happened to you? When they don’t know the answer — when they’re unable to peg their symptoms to something in their past that was destructive — they may feel there’s something wrong with them, that they’re broken or defective.Lopez is dedicated to changing these destructive patterns and helping individuals realize that symptoms occur for a reason. Since traditional talk therapies are typically ineffective for treating issues arising from memories for which one has no words, she sees it as her mission to help people use more pinpointed techniques that have been advancing in the last 30 years. In “Live Empowered!” she describes three brain-based therapies — Eye Movement Desensitization and Reprocessing (EMDR), Brainspotting, and Neurofeedback — through which therapists can access the mind’s hidden control panel, explore the root causes of obstacles, and reprogram responses and behaviors.

Developed by clinical psychologist Francine Shapiro to mitigate symptoms linked to traumatic memories, EMDR is an evidence-based therapeutic method that relies on bilateral brain stimulation, whether through eye movements, sound, or touch, to target and process memories stored in the nervous system and manage maladaptive behaviors that stem from them.

David Grand, PhD, who discovered Brainspotting, describes a brain spot as a “a point in visual space that a client has a strong reaction to.” With his technique, a therapist uses a pointer to guide clients’ eye movements across their fields of vision to help identify those points, which, Lopez writes, “hold an active memory (explicit and implicit) tied to an undesired symptom or corresponding to the neural pathway you want to modify.” Brainspotting helps them process and let go of the stored emotions.

Neurofeedback, or electroencephalogram biofeedback, is a therapeutic strategy that that tracks brainwave activity and teaches clients to modify their brainwaves. When those modifications move in a direction that influences the brain to function more efficiently, clients receive visual, auditory, or other types of feedback that reinforce their efforts.

Each of these techniques is effective due to neuroplasticity — the brain’s ability to adapt, reorganize, and form new neural connections. These aren’t the only approaches to accessing implicit memory and treating trauma. Other approaches falling under the umbrella of somatic therapy are used by some therapists to target the encoded memories through the body rather than the mind. And therapists can use many additional nonverbal approaches outlined in “Live Empowered!” to decode implicit memory.

Working with implicit memory, Lopez observes, is a great opportunity to clear troubles or roadblocks that might otherwise impede individuals for the rest of their lives. “It’s about changing the codes that are driving what’s going on now so that people can live more productive lives, be successful, and feel good about themselves.”

Check back for more in-depth explorations of these individual brain-based therapies as well as somatic therapies that may also be helpful for problems arising from trauma stored in implicit memory.In addition to reading her book, you can learn more about Lopez and the techniques she uses at her website and in this episode of the Adoptees On podcast.