by arjie | 2025-12-20 14:16:23+00:00
Certainly there are many who use privacy to safely be opposed to things. Being in a database having some characteristic means you are selectable for that and therefore targetable for it. And there is a herd immunity in that if everyone is in a database but you, being absent from it is as good as being in it with the characteristic of “opted out of this information” and therefore everyone being private protects the ones who most need privacy. All of this is sound.

In many ways, I have lived my life in a way opposite to this. My genome is public, many of my life affairs are public[0], and I have had a child in a manner[1] that many people[2] have expressed antipathy for. It is entirely possible, perhaps even likely that my family and I will face consequences for this. I won’t pretend I have nothing to fear.

So why do it? Perhaps it’s worth looking at others who have done the same. Being gay in America was a great risk once. The mechanism of defence in that society was for homosexual people to operate in what we now call the “don’t ask; don’t tell” environment. By having a general taboo about discussing sexual identity in certain contexts it was possible for gay people to not be threatened. If you didn’t know anyone’s sexual identity how could you harm the homosexuals among them?

Why then did gay people decide to abandon the safety of privacy and push for public acceptance? Do they regret this new world where many gay people are known to be gay? I think that as a whole, those who are gay prefer to live in this society of open acceptance than that society of private tolerance.

I won’t pretend that all places in the world are like this. I would be much more hesitant to do this in the country of my birth: India. And even California’s checkered history with gay marriage is outmatched by, say, the Netherlands.

So it’s not risk-free to be public, but sometimes it’s worth it. In our case, I think humanity stands to benefit greatly from modern biotechnology. I think many people who would previously struggle to have children or who may fear passing on some disease can now safely have children. I think this is very important.

And I think I would rather we defend the medicine required for this in law and legislation (like GINA) than that we silently and privately tolerate it. My wife and I are normal people. My daughter so far is healthy and I pray she grows up and lives as such. I want you to know that this is what this technology is for: normal people to increase the chance they will have healthy children.

That’s why I’m public. Not because I have nothing to hide. But that I think it’s sometimes worthwhile to say “I could have hidden this but I would prefer for it to be publicly accepted”.

0: on my blog you will see a pregnancy log, and an IVF log, and pre-implantation screening results

1: we sequenced every embryo and chose one unaffected by the condition we share

2: from right wing non-profits to members of this forum or normal people reading the news, examples to follow

https://www.liveaction.org/news/reproductive-startup-sequenc... (Inaccurate accusation here - the third was aneuploid)

https://www.washingtonpost.com/technology/2025/07/16/orchid-... (Scroll down to see us - click comments to see the overwhelming opposition but with gratifyingly some support)