I was recently sitting across from my financial adviser, at his desk on the floor of a busy bank in Seattle. I panicked as I realized that, through a slippery stream of acronyms and jargon, I had lost track of the conversation. ETFs, A-shares, C-shares, rights of accrual…I had even studied up on mutual fund terminology for this meeting, and yet I had still gotten lost. It was distressing, as I had always been a good student and was trying to be a good adult. Then I had two saving thoughts: (1) I am still a smart person, just not well-informed in this particular area and (2) I might not actually care.
This got me thinking about the role of acronyms, terminology, and general jargon in other areas. Including science. Genetics is a great one for jargon: DNA, WGS, SNP*. As genetic information becomes more widely available to non-genetics experts, the barriers to understanding put up by terminology become even more problematic. Or do they?
Disciplines and professions use specialized terminology (and yes, acronyms!) presumably for one of two reasons. First, sheer convenience. It’s too much work to spell everything out or give long winded definitions each time a concept is needed. Instead we use shortcuts. Within the given discipline or profession, this is generally unproblematic because the meaning is known and therefore the shortcut is sufficient to communicate the idea. (Side note that assuming shared meanings of terms and concepts presents a real challenge — and opportunity! — in interdisciplinary work.)
The second potential reason is for exclusivity. Terms and acronyms can be used to exclude non-experts from the conversation. The terminology allies someone with a discipline or profession, identifying them as a group member and as a practitioner/follower of a certain set of ideas, principles, and knowledge. It also carves out who doesn’t belong in that group. Just like when your older sibling used to speak in Pig Latin with her friends to keep you out of the conversation.
Need to know basis
My financial adviser is very kind, and I don’t believe he was intentionally excluding me from the conversation — but that was the ultimate effect. I could have stopped and asked him to break down and define each term, but that would have taken hours…and, remembering my earlier thought, I didn’t entirely care. I was content to be on a “need to know” basis about these transactions, and entrust him to make the best decisions on my behalf.
It was a wake-up call for me to realize that many people probably feel the same level of disinterest and “happy to defer” attitude about genetics as I do about my mutual fund investments. And probably this is a good thing, to have allocations of expertise so that we don’t all have to become an expert in everything. Those who would argue that genetic information should only be available through a physician, rather than direct-to-consumer, might subscribe to this idea. There’s no harm in trying to self-educate, but just because you have the internet at your disposal doesn’t mean you can study up enough to make fully-informed and autonomous decisions about every aspect of your life. Maybe getting genetic information about yourself should involve an expert fluent in all the jargon. In particular because you might not actually care enough, or have adequate time to study up.
I’m still not convinced, though, and think that personal genetic information needs to be made accessible to non-experts. Direct-to-consumer genetic testing companies do a lot of customer education, partly because no one is going to buy a product of which they have zero understanding. There is also a small but admirable set of genetic counselors out there who for decades have been working on educating patients and families to make well-informed decisions about getting and acting on personal genetic information.
For me, the breakdown with the mutual fund comparison is that my money, while personal, is far less personal than my actual body – my personhood. With intimacy comes the desire to stay informed, and to make autonomous (or at least partly autonomous) decisions. My health, well-being, and genetic information are much more intimate than financial investments, so I’m — well — much more invested in making those decisions.
*DNA=deoxyribonucleic acid, the molecule that carries genetic information in most organisms. WGS= whole genome sequencing, the process of determining the entire DNA sequence of an organism (e.g., a person!). SNP=single nucleotide polymorphism, a change in a single base pair of DNA. Pronounced “snip”