Rae is a 26-year-old scientist working on a Department of Defense Project. She loves being outdoors — hiking, camping, kayaking, skiing, and the like. Very soon, she will complete her third egg donation cycle.
When Rae tried to access her egg donor medical records, she thought she'd be protected by HIPAA (Health Insurance Portability and Accountability Act of 1996).
The roadblocks she hit were unexpected: the egg bank did not want to disclose her records. So she consulted with an attorney who discovered something very interesting: egg donors might not be protected as patients under HIPAA, which has a tricky grey area to consider.
We Are Egg Donors: Hi, Rae! Tell us about yourself and why you decided to become an egg donor.
RAE: I’m a 26-year-old originally from Illinois. After moving to two different states for undergrad and grad school, I finally settled in beautiful Colorado about a year ago. I initially became interested in egg donation as an undergrad.
With a science background, I found the process of egg donation fascinating and I thought it would be a great way to pay it forward by helping someone start or grow their family.
I applied to several different agencies and it took well over a year to be chosen for my first cycle, which I completed back in April as an open donation to a wonderful single IM. My second donation was a few months later in September, which ended up being a low point in my experience as an egg donor. As of publication of this interview, I’m two months out from completing my third cycle.
WE ARE EGG DONORS: Can you walk us through the cycle where you ran into trouble accessing your medical records?
RAE: My second cycle was through the World Egg Bank (TWEB) in Phoenix. I applied with them shortly after my first donation and in late June they reached out to me to do a banked cycle.
WE ARE EGG DONORS: Please explain “banked cycle” for those who don’t know.
RAE: Typically, donors have to wait to be chosen by IPs for a live transfer — the fresh eggs are implanted in the IP or surrogate right away — but in a “banked cycle,” they select a few donors off the roster each month to do a cycle and then freeze those eggs for purchase by IPs later on.
Right after I was chosen, they had me sign a contract and nowhere in that contract did it say I wouldn’t have any access to my records. Three days before retrieval they had me sign a new contract, which included a clause that stated:
“The donor understands that as a volunteer who is not undergoing diagnostic or medical treatment for a disease, all labs, evaluations, examinations, medical records and retrieval information that are not cycle related are the sole proprietary property of TWEB. The World Egg Bank is not required to release any evaluation, screening or cycle related records to the donor and/or another donation agency.”
I was told I had to sign the contract as-is or I would be responsible for the cancelled cycle costs, which, three days prior to retrieval, would be thousands of dollars. Additionally, upon reading this clause I asked myself “how could this even stand in light of HIPAA?” It didn’t make sense to me. I signed the contract as it stood in fear of the alternative of canceling the cycle. In the back of my mind, I didn’t think they could deny me my records and figured I would do everything I could to get a copy after retrieval.
WE ARE EGG DONORS: Telling an egg donor that she’ll billed “thousands of dollars” for refusing conditions of a cycle… Reminds me of the egg donor agency that tried to bill an egg donor $3,400 for canceling a cycle before it began. What steps did you take to access your egg donor medical records?
RAE: After waking up from the procedure, anesthesia still wearing off, I asked my cycle coordinator if I could get my records. She flat out refused and would only tell me the number of eggs retrieved. I was thankful that I had access to all my LabCorp testing, which is made available online, as well as all the blood work and ultrasound information from my local monitoring clinic. However, I tried following up with TWEB again a week after my cycle to get a better understanding of the answer I was given in post-op. They still wouldn’t budge on giving me all my records pertaining to dosing, my genetic screening, and retrieval and continued to maintain that I had absolutely no rights to access these records. My next step was to try to seek outside advice.
WE ARE EGG DONORS: What did you do next?
RAE: I contacted an attorney with 10+ years experience in HIPAA law. Even she did not know off the bat any specific egg donor exemptions within the regulations regarding the obtainment of records. In fact, she initially thought there was no reason egg donors would not fall under HIPAA. However, after some digging she pointed me to a very important, but very gray area of the regulations.
WE ARE EGG DONORS: What did you learn about HIPAA as it relates to egg donation?
RAE: HIPAA is well over 1,000 pages long and there is an incredibly short section that touches on the procurement of organs.
Originally in the regulations, organ procurement was considered healthcare. But in 2001, DHH issued a final rule that redefined “healthcare” and provided examples of what was exempted from this new definition.
The 2001 final rule contains a section specifying that healthcare is:
“The preventive, diagnostic, therapeutic, rehabilitative, maintenance, or palliative care, and counseling, service, assessment, or procedure with respect to the physical or mental condition, or functional status, of an individual or that affects the structure or function of the body.”
Because of this definition, DHH further stated:
“We delete the term “providing” from the definition to delineate more clearly the relationship between “treatment,” as the term is defined in § 164.501, and “health care.”
Other key revisions include adding the term “assessment” in subparagraph (1) and deleting proposed subparagraph (3) from the rule. Therefore the procurement or banking of organs, blood (including autologous blood), sperm, eyes or any other tissue or human product is not considered to be health care under this rule and the organizations that perform such activities would not be considered health care providers when conducting these functions.”
Essentially, egg donors are not seeking treatment when they volunteer to donate. Therefore, they are not receiving healthcare and HIPAA only applies to healthcare-related activities. The gray area becomes evident when you see gamete donation lumped in with other types of organ donation. Organ procurement organizations, other than those that facilitate sperm and egg donation, are upfront about their exemption from HIPAA and their reasoning makes sense. Non-gamete organ donation is often done when the donor is no longer living. HIPAA exemptions in this case make it so those organs can quickly be given to someone who needs it in a life-saving situation. If the donor is no longer alive and HIPAA applied, it would get so complicated and take so much time to get HIPAA authorization from next of kin that it would potentially prevent a life from being saved.
Furthermore, in exempting organ procurement from HIPAA, DHH never meant for that exemption to be used to keep information from donors, but rather make their information accessible to other parties, including the receiving patient’s doctors, to quicken the donation process.
In my case, it makes very little sense to me as why any IPs interested in my banked eggs could receive my records, whether they end up purchasing my eggs or not, yet it my records are being entirely withheld from me.
The attorney I reached out to said it most likely comes down to one thing at the end of the day: profit.
There’s no doubt egg donation is a highly profitable industry here in the U.S. and if an agency considers donor records their “sole proprietary property,” there are obviously business motives.
WE ARE EGG DONORS: Any advice for egg donors?
RAE: As egg donation becomes more common, it becomes more evident that better legal protections are needed for donors in an industry that is mostly self-regulated. Until that happens, it all comes down to advocating for yourself and being informed.
Unfortunately, I was not given an attorney to review the contract with and I did not have an understanding of HIPAA laws. Donors should make sure they work everything into their contracts and communicate with their agency well in advance.
Donors should also know that even though organ donation may not technically fall under HIPAA, agencies and clinics have the ability to opt into it completely or opt into it on a case-by-case basis.
It’s best to know how your agency and clinic will handle your records ahead of time and that you’re vocal if you have issues. It’s okay to have deal breakers as an egg donor and it’s important that you stick to them. Also, as past, current, and future egg donors I think we all owe it to one another to share our experiences, good and bad.
In my case, I’m still pursuing my medical records, just not from a HIPAA perspective. Instead, I’m approaching the situation from a business ethics standpoint because of their tactic of requiring me to sign a different contract three days before retrieval. As of this interview, I’ve submitted a formal complaint with the BBB and am awaiting a response.
WE ARE EGG DONORS: Good luck, Rae, and thanks.
Photography credit: Sandis Helvigs