Will "repeal and replace" hurt genomic medicine and victims of genetic conditions?

Let me give you the short version of my answer up front: Yes. If the current privacy protection for genetic medicine in the US, in which Obamacare/ACA has played a key role, is diminished by the "repeal and replace" efforts of the current US administration, then America's hopes for genomic medicine will also be diminished. Victims of some genetic conditions will be particularly hard hit, as will all forms of research that involve the human genome.

The even shorter version goes like this: Why would I give anyone my genetic information if that might lead to myself and my family being denied insurance or paying higher premiums, for medical, life, or longterm care policies?

Fans of genomic medicine are apt to respond by saying there's no need to worry because there are laws to prevent that type of discrimination. To which I have heard many people say: I don't trust the insurance companies and/or the government to abide by those laws. And besides, laws can be repealed, and databases can be hacked.

In short, when it comes to enjoying the benefits of medical science, Americans face a bleaker future than the residents of other wealthy countries due to the absence of two rights: the right to health care and the right to privacy.

Background

Who am I to present these arguments? For more than 25 years I've been studying information security, data privacy, and risk. I've been a Certified Information System Security Professional for more than two decades and I have a Master of Science degree in Security and Risk Management. I have also put in more than a decade as primary caregiver for someone with a genetic illness (variously known as hereditary hemochromatosis, genetic haemochromatosis, Celtic Curse, Bronze Diabetes, Iron Overload). In that role I have spent many years interacting with the families of hemochromatosis patients and the main support group for this condition, the Iron Disorders Institute.

What is the problem? The House recently passed legislation called the American Health Care Act of 2017 (H.R. 1628). There is a Senate version known as the Better Care Reconciliation Act of 2017. As far as I know, both of these pieces of legislation remove a gene-related provision of the current law, ACA (a.k.a. Obamacare). Here's the problem:

1. The Genetic Information Nondiscrimination Act of 2008 a.k.a. GINA says employers and health insurers can't use your genetic data in hiring decisions and health insurance coverage; but, as Maryam Zaringhalam at Slate points out: life, disability, and long-term care insurance are not covered under GINA’s provisions, and those insurers "already use genetic testing results to deny coverage to otherwise healthy individuals".
2. Furthermore, GINA only protects people who are genetically predisposed to a disease as long as they are asymptomatic. In other words: "once a person begins showing symptoms, GINA no longer matters" (Zaringhalam- see link in References below). For example, my wife was born with the HFE mutation that can produce a potentially fatal condition known as iron overload but she was asymptomatic for the first few decades of her life. Then, in her forties, due a phenomenon dubbed hemopause, she became increasingly symptomatic. She is now eminently "declinable" under pre-Obamacare rules.
3. This GINA "loophole" as Zaringhalam calls it, was closed by Obamacare. That's because the ACA outlawed discrimination in health care insurance pricing or coverage based on preexisting conditions.
4. Now the current administration looks set to return America to the days when preexisting conditions were considered grounds for charging higher insurance premiums.
5. That would mean returning health insurance to the list of things you pay more for if your insurer has knowledge of your genes. Remember, that list already includes life, disability, and long-term care insurance.

I would be the first to admit that the above is a simplified account of the problem, but I stand by its accuracy and will go into more detail below. A complicating, and possibly offsetting factor in this story is the plethora of state laws on genetic data, medical privacy, and health insurance. Those might give you hope, but then you have to factor in the rampant hacking of supposedly private databases of personal and medical information that we have witnessed over the past few years. Bottom line? It is not hard to understand a response of "No way!" when you suggest to someone that they should get their genes tested, even when that test could potentially save their life, or those of their relatives.