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How Your Biosamples Are Used and Protected
If you choose to donate a biosample, it’s natural to want to know exactly what happens next. You want to know how your biosamples are handled, stored, and used in research and the safeguards we put in place to protect your privacy, your choices, and your trust.
Here’s a step-by-step look at how biosamples move through the research process. Each step is designed with care, oversight, and respect for your consent.
Biosamples are collected during a clinical trial visit or medical appointment, following approved procedures to ensure safety and quality.
Once collected, each biosample is labeled with a unique identifier. Your name and direct personal details are not attached to the sample. This helps protect your privacy while allowing the sample to be tracked appropriately.
Biosamples are stored under carefully controlled conditions to preserve their integrity. Depending on the type of sample, this may include specialized storage environments designed for long-term preservation.

Researchers who want to use biosamples must submit a request that explains:

  • The purpose of the research
  • How the sample will be used
  • Why the research is scientifically and ethically appropriate
Each request is reviewed to ensure it aligns with patient consent and established ethical guidelines.
Insights gained from biosamples help researchers better understand rare diseases and support the development of future treatments. Every sample contributes to a broader effort to improve care for patients today and in the future.
From the moment a biosample is collected, we take steps to ensure it is handled safely, securely, and ethically.

Privacy and confidentiality

Protecting patient privacy is our number one priority. Personal information is handled according to privacy laws and regulations, and safeguards are in place to limit access to sensitive data.

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Ethics and oversight

The use of biosamples is guided by strict ethical standards. Review boards and expert teams evaluate research requests to ensure they meet scientific, ethical, and patient-consent requirements.

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Restricted access

Only authorized researchers and teams who have received appropriate approvals can access biosamples – and only for the purposes you’ve agreed to.

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Your biosample is always used responsibly. You decide how it can be used, and Alexion follows those instructions carefully. Samples are never used for purposes outside your consent, and your medical care or participation in clinical trials is never affected by your decision.

Your Consent Guides Every Use:

  • Approved scientific research
  • Learning more about diseases
  • Supporting the development of future treatments

All use must align with the informed consent you provide.

What Your Biosamples Will Not Be:

  • Sold for commercial purposes
  • Used for unapproved research
  • Used in a way that identifies you personally
These boundaries are essential to maintaining trust and protecting patients.
Biosamples play an essential role in medical research. By studying them, scientists can make meaningful advances that improve how diseases are understood, diagnosed, and treated.
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Disease causes and progression

By studying biosamples such as blood or tissue, researchers can identify markers (called biomarkers) that show how a disease develops and changes over time. This knowledge helps uncover new ways to treat disease.

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Accurate diagnosis

Biosamples help doctors diagnose diseases more accurately. Certain proteins or genetic changes found in samples can confirm the presence of specific conditions, helping patients receive the right care sooner.

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Testing drugs

Researchers use biosamples to study how potential treatments interact with the body. This can help predict whether a drug may be safe and effective before it is given to patients.

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Tailored medical care and targeted therapies

Biosamples support precision medicine – an approach that tailors treatment based on a person’s unique biology. For example, studying genetic information from biosamples can help identify treatments that are more likely to work for certain patients, rather than relying on a one-size-fits-all approach.

Knowing there are clear rules around how my sample is used makes me feel respected and more comfortable with my decision.

Actual patient living with lupus nephritis

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Still Have Questions About Donating a Biosample?
For more information or reassurance, find answers to common questions and terms you should know on our resources page.
Explore resources
AstraZeneca and Alexion: Better care through research
Alexion is a global pharmaceutical company focused on developing life-changing therapies for people living with rare diseases. As part of AstraZeneca, we bring together world-class science, extensive knowledge of rare diseases, and a commitment to patients to deliver innovative treatments and advance clinical research.