As humans, we have a desire to know who we are and from where we come. Perhaps our reason for this desire is to learn our history, or to help determine our future. Perhaps we desire this knowledge to understand our current condition – be it a medical condition or simply curiosity. Whether this stems from a desire to better understand one’s own identity or medical conditions, many individuals are denied access to information regarding their parentage and family medical histories due to the circumstances of their birth.
In the United States, there is not a federal standard or law granting individuals a right to access this information, and very few states have laws regarding this either, especially in the context of individuals conceived from assisted reproductive technology (ART). Last week Utah became one of the few states to pass a law allowing individuals conceived through ART to have some access to this information. In the law passed in Utah, individuals were granted the right to access to the medical records of their biological fathers if they (the children) were conceived through sperm donation. Although this law does not open access to information for all situations, it does have important implications for individuals seeking health information, or wanting to have a full background of their family medical history.
This issue of ART is controversial and it often overlaps with issues of marriage, abortion, and embryo creation/destruction, making it treacherous ground for legislators. However, even though it is controversial, thousands of children are born each year from ART (see 2012 CDC report for more information regarding the numbers). Because we don’t have laws in place granting these individuals a “right to know,” in most states, this information on parentage and family medical history is almost entirely unattainable. I hope to see more states follow Utah’s lead and begin to discuss and legislate on the issue of ART, even if it starts with small steps, such as access to medical information.
Please note: I realize that ART includes many different procedures that each have unique ethical considerations. For this post I decided not to delve into the ethical consideration of each of these issues or the specific regulations that would be ideal in each situation.