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Confidentiality and privacy in assisted reproductive technology

On Behalf of | Jan 27, 2025 | Assisted Reproduction

Worrying about privacy as an intended parent, donor or surrogate is normal. You may fear how assisted reproductive technology (ART) workers handle and protect your private data throughout the process. After all, there have been several privacy breaches that have caused problems for couples. 

For example, a fertility clinic accidentally let a sperm donor’s identity slip to the intended parents, causing a legal fight and stress for both sides. In another case, the media shared a couple’s surrogacy agreement without their permission, causing stress due to unwanted attention. Then, a data breach at a fertility clinic gave away several patients’ personal and medical information, leading to identity theft, financial loss for one couple and a loss of trust in the clinic’s ability to protect sensitive data. 

Privacy laws

U.S. law requires fertility clinics and ART workers to keep patient data private. This includes: 

  • Medical records: Clinics must keep patients’ medical records private and safe, sharing them only with authorized staff. 
  • Donor anonymity: When using donor eggs, sperm or embryos, clinics must keep the donor’s identity secret unless both sides agree otherwise. 
  • Surrogacy contracts: These contracts often include privacy rules to protect the privacy of the surrogate and intended parents. 

Keeping privacy helps build trust between you and your ART providers, ensuring a smoother and safer process. 

Privacy in ART

Many state and federal laws protect your privacy rights in ART. These rights ensure that ART workers handle your personal and medical information carefully. 

  • HIPAA Compliance: ART clinics must follow the Health Insurance Portability and Accountability Act (HIPAA), which sets national rules for protecting health information. 
  • Informed Consent: ART workers must tell you how they will use and share your data and get explicit permission before any procedure. 
  • Data Security: Clinics must use strong data security measures to prevent unwanted access to your data. 

Privacy breaches can still happen despite these protections, leading to harmful effects. 

What you can do

Make sure your ART provider follows U.S. legal standards and respects your privacy. If you have any worries, consider talking to a lawyer to understand your rights and duties.

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