NPE Study Habits
“I have a keen sense of the oblivious.”
- Josh Stern
The U.S. National Library of Medicine’s website, www.clinicaltrials.gov, is the world’s largest repository of medical research studies, currently listing nearly 400,000 research projects registered in over 200 countries. I recently searched for studies and found:
11 for “chili peppers”
26 for “arachnophobia” (fear of spiders)
41 for “gardening”
592 for “music”
zero for “NPE”
zero for “non-paternal event”
zero for “not parent expected”
zero for “misattributed paternity”
If you suspected that NPE issues receive no scientific attention, you are correct: apparently, not a single government sanctioned NPE study is on-going anywhere on planet earth.
NPEs, we have a lot of work to do!
Until we change the world, we can start by changing our little corner of the world, and in particular our medical world. In 2020 I learned that I am an NPE. This discovery means that every Family Medical History (FMH) form I have ever completed contains wrong information. If you are an NPE, then your FMH is likely as incorrect as mine. So, what can we do?
Foremost, recognize that whenever seeking help from a physician, psychologist, or other clinician, you may need to educate your health care professionals about NPE issues, rather than them educating you. Once this discussion has occurred, consider asking your clinician:
1) what MP training they have and - if they have little-to-no training – could they refer you to a more knowledgeable provider,
2) whether your clinician has withheld any “incidental findings” from you in the past, specifically, genetic information
3) their professional thoughts as to the benefits and risks of disclosing unexpected genetic information to existing family members, newly identified relatives, and friends,
4) what treatment (counseling, medications, other) the clinician would consider for an NPE and the rationale for their choices,
5) whether the clinician knows of any NPE-related research as well as if they would support - or even initiate - such research, and
6) if the clinician can direct you to an NPE advocacy or support group.
Next, NPEs should consider scheduling an appointment specifically to update and discuss previously submitted FMH forms. Clinicians’ decisions to offer or withhold various health screening tests or treatments, among other important decisions, can be affected by FMH. Accurate information is essential. If an NPE does not know their biological FMH or has obtained new FMH information, revise the form appropriately. In either instance, re-evaluate past medical decisions and whether a different course of action is now advisable.
Finally, advocate for more research wherever and whenever you can. So many questions remain unanswered:
- how many NPEs exist, in terms of percentage of the population as well as total numbers
- NPEs’ demographic information
- methods by which the NPE discovery was made
- impacts (physical, psychological, estrangements, financial, etc.) of NPE discovery on the individual, their known family, and their newly discovered family
- NPE coping mechanisms and the effectiveness or ineffectiveness of such mechanisms
- long-term effects of NPE discoveries
There are more questions, but you get the idea.
A need exists for greater societal awareness of NPE issues. How to achieve that awareness? I am not sure, but I suspect engaging the medical/scientific community as a key partner would be essential. So, however, wherever, and whenever you can, please advocate with your clinicians, public health servants, politicians, researchers, or others positioned to help find answers to the aforementioned questions. We need to replace being oblivious with being informed!
I hope to see the day when www.clinicaltrials.gov lists more NPE studies than chili pepper studies!